Wednesday, July 23, 2014
All We Can Do Is Try...
Reality is setting in. Noah is 2. He is not a baby. He is a toddler. There is a mile long list of things he should be doing at 2 years old. But he's not. And it sucks. It flat out sucks and I will say that without any shame or guilt. Before now, it was easy to turn a blind eye to the fact that he was disabled. Sure, I had to carry him everywhere, change his diapers, bathe him, etc. but that seemed like normal "baby" stuff. But now he's 2. Not so much a baby. He's almost 32lbs and about the same size as his brother. I am having a really hard time with the fact that this is how the rest of his life is going to be. Of course I knew his prognosis for someone with his disease. I know the clinical manifestations of PMD. But I so badly did not want that to be my child. I still don't. All of this is coming at a time when Noah is not doing so hot. He's been sick with fevers a few times over the past few months. He's been vomiting almost every day for the past 9 months. He's getting to a point where he mostly just wants to hang out in his bed a majority of the day. I do not want that to be my child. I want him to interact and play and smile and be happy. But I feel like he is having more bad days than good ones. And it's hard to cope with emotionally. I do not ever want to see him suffer or hurt or be unhappy. I have tried a million and one things to help with his vomiting and at this point it is out of my hands. We are being referred to Dell Children's to have another procedure to place a different type of feeding tube. This new tube will go all the way into his small intestine where he will be fed on a slow, continuous drip for about 22 hours per day. It will be a big change for us but I am so hopeful that this will stop the vomiting. The bad news is that this is yet another intervention. It upsets me to think about this as being another decline in his health. He is no longer tolerating his full feedings like he used to. This new feeding tube is not the end of the world. It's not even that big of a deal in itself. But symbolically, for me anyway, it just means another step backwards. And it's so hard for me to make this decision after I have fought so hard and tried so many things to not let it get to this point. But like I said this is now out of my hands. And maybe this will end up being the greatest thing for him. Who knows? All we can do is try.
Thursday, July 10, 2014
Birthday Letter...
To my precious Noah,
As I sit here on the eve of your 2nd birthday I am overcome with emotions. Too many to even count. I think back to that day 2 years ago and I just remember being so excited to finally meet you. I couldn't wait to see if you looked exactly like your big brother. I wanted to kiss your beautiful face and hold your tiny fingers in my hand. I wanted to breathe in that heavenly newborn smell.
You were born into this world at 5:33pm and that's the moment my life changed forever. You were placed on my chest for a brief moment before you were taken from me. A whole 9 months of you and I being "us" ended just like that. You were silent and having trouble breathing. I was in bed taking in the moment and thinking that the hardest part was over. After a few minutes I turned to my Mom who was at my bedside and I asked if you were okay. She said you were fine and then I heard your first noise. A tiny little squeak. Then the nurse rolled the incubator over to me and you had an oxygen mask covering up your precious little face. She moved the mask away, only for a moment, so I could see you for the first time. You were so beautiful. She asked if you had a name and I said Noah.
And then you were gone.
I will never forget seeing you in the NICU for the first time. You looked so tiny to me although you were a good 3lbs bigger than all the other babies there. I could only stand to be in there for about 10 minutes before I had, had enough. This was not supposed to happen to me was all I kept thinking. I'm supposed to be holding and cuddling and nursing you, my hours old newborn. Not staring at you in an incubator while you had machines keeping you alive.
It was all such a blur at the time. But now I can remember everything in vivid detail and I can't decide whether that is a good or bad thing. I suppose one day I will be grateful to remember everything about you, including the day you were born. But sometimes it feels like I am trying so hard to forget.
These past 2 years have seen a lot of joy and a lot of pain. Many struggles but also great achievements. I don't know of anyone that I could possibly be more proud of besides you, my sweet angel. I know we are right on the edge of doing some big things with you. You are showing us more and more every day about how smart you are and how much you know and how much you can do. You are truly the most amazing person I know.
Thank you for letting me love you imperfectly. Thank you for showing me how to be the person I am supposed to be for you and for your siblings, too. But most of all, thank you for being you. My sweet miracle, Noah Jack. I hope you have the best day followed by the most awesome 2nd year. Happy birthday to you, baby boy.
Love,
Mommy
As I sit here on the eve of your 2nd birthday I am overcome with emotions. Too many to even count. I think back to that day 2 years ago and I just remember being so excited to finally meet you. I couldn't wait to see if you looked exactly like your big brother. I wanted to kiss your beautiful face and hold your tiny fingers in my hand. I wanted to breathe in that heavenly newborn smell.
You were born into this world at 5:33pm and that's the moment my life changed forever. You were placed on my chest for a brief moment before you were taken from me. A whole 9 months of you and I being "us" ended just like that. You were silent and having trouble breathing. I was in bed taking in the moment and thinking that the hardest part was over. After a few minutes I turned to my Mom who was at my bedside and I asked if you were okay. She said you were fine and then I heard your first noise. A tiny little squeak. Then the nurse rolled the incubator over to me and you had an oxygen mask covering up your precious little face. She moved the mask away, only for a moment, so I could see you for the first time. You were so beautiful. She asked if you had a name and I said Noah.
And then you were gone.
I will never forget seeing you in the NICU for the first time. You looked so tiny to me although you were a good 3lbs bigger than all the other babies there. I could only stand to be in there for about 10 minutes before I had, had enough. This was not supposed to happen to me was all I kept thinking. I'm supposed to be holding and cuddling and nursing you, my hours old newborn. Not staring at you in an incubator while you had machines keeping you alive.
It was all such a blur at the time. But now I can remember everything in vivid detail and I can't decide whether that is a good or bad thing. I suppose one day I will be grateful to remember everything about you, including the day you were born. But sometimes it feels like I am trying so hard to forget.
These past 2 years have seen a lot of joy and a lot of pain. Many struggles but also great achievements. I don't know of anyone that I could possibly be more proud of besides you, my sweet angel. I know we are right on the edge of doing some big things with you. You are showing us more and more every day about how smart you are and how much you know and how much you can do. You are truly the most amazing person I know.
Thank you for letting me love you imperfectly. Thank you for showing me how to be the person I am supposed to be for you and for your siblings, too. But most of all, thank you for being you. My sweet miracle, Noah Jack. I hope you have the best day followed by the most awesome 2nd year. Happy birthday to you, baby boy.
Love,
Mommy
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