On May 14th at 5:53 a.m. Little A was born 3 weeks early and after 30 hours of labor. There were no words to describe the intense love we already had for this little human. Right away we were getting many texts and emails full of love from friends and family just wanting to know all about him. But,I personally was struggling with what to tell people and most of the time just said "thank you, He's well or fine". They would ask for pictures and I didn't know what to send because I didn't want people to know what was going on. I wasn't ready to say out loud and make it real...that it has been nothing that I thought and less than a week old it's already been a tough road. Unfortunately looking forward it won't get easier. We wouldn't have made it this far without the love and support of our families. The grandparents are not only in love with their new grandchild but ready to help us and support us in any way to make the path less scary. Right after he was born I got to hold him immediately before they took him to find out his stats. That is when we found out his ears were very tiny...one has a very narrow canal and the other canal is all closed up. Ok I thought hearing can be fixable...or as my brother said we will all learn sign language. He's still our boy! He was given back to me and we snuggled and the nurses helped try to feed...and said all newborns take time. It was all going pretty well...we got moved to our new room. A nurse took him to get a bath just down the hall and would be back in 20 min. I closed my eyes and next thing I new I jumped awake realizing it's been longer. I was about to go see what was happening when a doctor from the nicu came into my room. Little A had aspirated as they were starting his bath and had some trouble coming back from it so they brought him to nicu for observation. Well what we thought would just be an overnight observation in the nicu turned out to be more. Little A was able to breathe on his own perfectly fine but he had trouble when it came to feeding. He forgot to take breaths while eating and continued to work with feeding specialists. We kept praying he would figure this out sooner rather than later, but in order to bring him home we opted for the feeding tube. Three weeks later, I was excited to bring home my baby finally, but it was very scary as well. When they decided he could be discharged, I had just 24 hours to learn how to care for his g-tube (feeding tube) and how to use the feeding pump. With all my adrenaline running and the desire to just have my baby home I no longer had time to feel scared or worry about anything….I just needed to learn and do whatever it would take to bring him home. Discharge day still sticks out in my mind…my mom came with us to the hospital. We were finally those people carrying the empty car seat through the lobby knowing it was going to have a baby on the way out. Little A had to have a car seat test before his discharge was official and so he sat in his car seat on the NICU floor still hooked up to the monitors for 90 minutes….he passed! Best feeling in the world, no matter what the journey ahead was going to look like, was walking out of those hospital doors with our baby in his car seat. We wouldn’t have to have that guilty feeling anymore as we left the hospital because he was with us. Since leaving the hospital in June, there have been quite a few doctor visits. After some genetic tests and talking with the Doctors at the NYC hospital, it has been determined that Little A has Treacher Collins Syndrome (TCS). At the time all I knew of TCS was the book Wonder and the movie from a year ago. (Side note: As a Teacher, that book had become my favorite book because of the great message of showing kindness before my son was ever diagnosed. It is still my favorite book and I will continue to use it in my classroom every year to spread the message.) We are learning so much more about TCS including how it is a spectrum. There are some cases that are really severe and others that are so mild that they don’t even know they have it. Little A falls to the mild-moderate part of the scale. His outer ears are like little nubs with one canal completely closed and the other canal is very narrow. We know that some sound gets through. His swallowing and bottle feeding issues were partly due to his jaw being set back a bit therefore causing his tongue to be too far back. His airway and esophagus are also on the narrow side. We are thankful that he did not have a cleft palate or lip. On the more severe end of the TCS spectrum, cheek bones, eyelids and all of the bones in the face can be affected. TCS is the mutation in certain genes that affect the growth of the facial bones during pregnancy. Unless it is very severe and you know to look for it, it is not easily detected in ultrasound. TCS should not affect his intelligence--just appearance and hearing. We are lucky that just looking at Little A it is not so easy to see that he has something going on, since we have found that ears is not something most people notice. It is more obvious when he has his BAHA’s (Bone Anchored Hearing Aids) on or we are feeding him through his tube. But I have decided it is not something I am going to be embarrassed about. This is my normal and I’d rather spread awareness and educate the world than hide. Little A will have some surgeries in his future to create ears and hopefully provide him hearing with the BAHAs.. Although he has made really great progress so far with his feeding/swallowing...he still has a bit more to go in order to get off of his feeding tube. We do have a goal for ourselves and great hope that he will get there.When we first brought him home he was just getting tastes of milk off of his pacifier. Now at 7 months old, he has drank 5 ounces from the bottle a few times. We just keep hope and keep trying everyday. Whenever we get frustrated we just try to remember where he started not too long ago. As new parents this may not have been the road we expected to take, but we will do anything in our power and control to make sure that Little A feels all the love and happiness his family and the world has to offer him. We wouldn't trade him for anything! We are so thankful that our families and friends have shown us so much love and support. That is has energized us for this journey ahead. We decided to share our story and journey in hopes that it will help someone else who just found out they will be on this ride as well or someone who has been on it, but felt alone. Supporting each other and spreading kindness will help make the world a better place for Little A.
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