Many people have asked me about what exactly happened in those first tumultuous weeks of Gracie's life. What was her condition? Did we know before she was born? What was her initial prognosis? I began this blog while we were still in the midst of everything, so this is the first time I have been able to consider sharing what went down. So I am going to try to share the untold beginning of our tale in hopes that it might help someone else as well as include all of you who have supported us along the way. And now that we all know what a happy ending (or should I say, beginning) Gracie's story has, I am able to tell it.
I went into labor at 41 weeks at the end of a seemingly healthy and normal pregnancy. My labor came on fast and it was furious! They took me back to triage right away. In hindsight, I noticed the nurses eyes flicker as she watched Gracie's heart rate. After several hours of tough contractions, the doctor suggested a C-section due to fetal intolerance (her heart rate dropped with contractions) and I was not progressing. I was completely on board with this as I would have done anything to stop those contractions!!!!!! So the C-section went off without a hitch and everything seemed fine. No NICU, no immediate signs of distress..... we just noticed that Gracie sounded like she was snoring all the time, which we now know is called strider. Then she had trouble with feeding and gaining weight. She wasn't able to nurse and could only drink from a bottle in a very specific position. She would frequently get "dusky" or turn blue-ish after feeding. We now know that this is because she had such a tight airway that she had to choose between eating and breathing. This tight upper airway and floppy trachea are "malacias". Laryngomalacia and trachealmalacia. Gracie also has/had micrognathia, or a very small lower jaw. Again, we are still within the first 4 days of her life and knew none of this. The nurses and lactation consultants seemed confounded by us and frequently gave each other "looks". We were so tired and overwhelmed....not to mention new parents. We just didn't know that we should have been demanding better care. One nurse finally took Gracie to the nursery for one night of observation. Again, not the NICU, just the nursery. Whichever doctor was on that night said she was "fine" and if she could at least maintain her weight, then we could go home... with a baby who turned kind of grey after trying to eat and breathed with a funny sound....... Yes, I have seriously considered a law suit but decided instead to use my energy to support Gracie. And I would need all of the energy I could muster for the next five weeks and then the subsequent 2 1/2 years!
So home we went where we spent a hellish 48 hours with a hungry, screaming baby who couldn't really swallow or breathe all that well. We got right into our new pediatrician. At this point, it was more like episodes of struggling with long stretches that seemed pretty normal. But our our pediatrician saw her try to drink a bottle and turn blue, she blew the whistle. Finally!! So we were sent straight to the PICU where Gracie was finally diagnosed with Laryngomalacia. But the thing is, most kids just outgrow this. It is actually very common. So we did tests to rule things out, scopes, discovered reflux and trachealmalacia, and waited..... until one bronchoscopy made the decision for us. I will spare you all the extreme trauma we experienced and suffice to say that Gracie's airway collapsed under anesthesia and they nearly could not intubate her. My hands shake still to this day every time I think of it, so I try not to. But they obviously did save her and it was clear that she had a critical airway and a tracheotomy was necessary. Yes, Ramsey and I both have PTSD to some degree.
Then our medical training began. I listed all of our new found skills in my previous post. It was scary and intense, for sure, but we had tons of help and support from family and our medical team. But I soon learned that Ramsey and I were Gracie's best advocates and we became quite the team! So we had about two weeks of training between the hospital and Los Ninos which is a step-down facility designed to help families transition home. We finally got home on April 8th, 2011. And then you all know the rest! I wish I had a happier tale to tell of Gracie's beginnings, but as you can see throughout this blog, the trach, therapies and LOVE helped our little girl thrive and only good things were on the horizon :) And now she is laughing, singing and jumping around like none of this ever happened :) She is beyond her years in many ways and is the most thoughtful, creative and cleaver little girl I know. Happy 3rd Birthday Gracie Jane!!!!!!!!!!!!!!!!!!!!!!!!! We love you!!
I went into labor at 41 weeks at the end of a seemingly healthy and normal pregnancy. My labor came on fast and it was furious! They took me back to triage right away. In hindsight, I noticed the nurses eyes flicker as she watched Gracie's heart rate. After several hours of tough contractions, the doctor suggested a C-section due to fetal intolerance (her heart rate dropped with contractions) and I was not progressing. I was completely on board with this as I would have done anything to stop those contractions!!!!!! So the C-section went off without a hitch and everything seemed fine. No NICU, no immediate signs of distress..... we just noticed that Gracie sounded like she was snoring all the time, which we now know is called strider. Then she had trouble with feeding and gaining weight. She wasn't able to nurse and could only drink from a bottle in a very specific position. She would frequently get "dusky" or turn blue-ish after feeding. We now know that this is because she had such a tight airway that she had to choose between eating and breathing. This tight upper airway and floppy trachea are "malacias". Laryngomalacia and trachealmalacia. Gracie also has/had micrognathia, or a very small lower jaw. Again, we are still within the first 4 days of her life and knew none of this. The nurses and lactation consultants seemed confounded by us and frequently gave each other "looks". We were so tired and overwhelmed....not to mention new parents. We just didn't know that we should have been demanding better care. One nurse finally took Gracie to the nursery for one night of observation. Again, not the NICU, just the nursery. Whichever doctor was on that night said she was "fine" and if she could at least maintain her weight, then we could go home... with a baby who turned kind of grey after trying to eat and breathed with a funny sound....... Yes, I have seriously considered a law suit but decided instead to use my energy to support Gracie. And I would need all of the energy I could muster for the next five weeks and then the subsequent 2 1/2 years!
So home we went where we spent a hellish 48 hours with a hungry, screaming baby who couldn't really swallow or breathe all that well. We got right into our new pediatrician. At this point, it was more like episodes of struggling with long stretches that seemed pretty normal. But our our pediatrician saw her try to drink a bottle and turn blue, she blew the whistle. Finally!! So we were sent straight to the PICU where Gracie was finally diagnosed with Laryngomalacia. But the thing is, most kids just outgrow this. It is actually very common. So we did tests to rule things out, scopes, discovered reflux and trachealmalacia, and waited..... until one bronchoscopy made the decision for us. I will spare you all the extreme trauma we experienced and suffice to say that Gracie's airway collapsed under anesthesia and they nearly could not intubate her. My hands shake still to this day every time I think of it, so I try not to. But they obviously did save her and it was clear that she had a critical airway and a tracheotomy was necessary. Yes, Ramsey and I both have PTSD to some degree.
Then our medical training began. I listed all of our new found skills in my previous post. It was scary and intense, for sure, but we had tons of help and support from family and our medical team. But I soon learned that Ramsey and I were Gracie's best advocates and we became quite the team! So we had about two weeks of training between the hospital and Los Ninos which is a step-down facility designed to help families transition home. We finally got home on April 8th, 2011. And then you all know the rest! I wish I had a happier tale to tell of Gracie's beginnings, but as you can see throughout this blog, the trach, therapies and LOVE helped our little girl thrive and only good things were on the horizon :) And now she is laughing, singing and jumping around like none of this ever happened :) She is beyond her years in many ways and is the most thoughtful, creative and cleaver little girl I know. Happy 3rd Birthday Gracie Jane!!!!!!!!!!!!!!!!!!!!!!!!! We love you!!