To say that I am feeling thankful these days is just not enough. Thankful isn't a big enough word to cover all that I feel. I don't think there are words out there that can explain it.
This fall has been an emotional roller coaster for me. Such amazing highs, such horrible lows, reliving every second of this time last year from their birth, watching them grow, scared for them to come home, coming home, then scared that we were going to loose our boy, then watching him taken away in an ambulance to a place I had never seen. Living life with two small infants at home and one very sick baby three hours away. It was not how it was suppose to be, I wasn't able to soak up Neva and Matthew's first weeks at home because I rushed through everything with them so I could get on the phone with the nurse and talk about Jackson. Or I resented their needy cries because they were home and perfect, why should they cry? Their brother was fighting for his life miles away, he had a reason to cry. I could go on an on...but you get the point. After some time I realized that this wasn't the way to be so I made myself accept our situation and realize that the family I waited years for was here and it was time to be a mom to all my babies, not just Jackson.
This time last year we were loading the car to go to Philadelphia. Our first Thanksgiving as a family was spent in a hotel room at the Crown Plaza just a few minutes from CHOP. Two infants and two adults in a hotel room for 48 hours. We spent the whole time alternating visiting Jackson because I didn't want Neva/Matthew exposed to so many germs. It went something like this.... we fed them at 6am and I ran out of the door, drove like a crazy person and was in the NICU by 6:45. Brian was left to entertain the other two until 9am when I came running back for the next feed. Then we fed them and he ran out of the door until 12pm...repeat repeat repeat. There was a lot of strolling up/down the hallways, looking out windows, sitting in the lobby to pass the time. Our time with Jackson was spent trying to keep him comfortable, watching monitors to make sure he was still breathing, passing him off to the nurse when he wasn't breathing well, watching them intervene with different techniques to get him breathing again. When it was time to leave Friday he had one of his worst "events" of the week and that's how I had to leave him. I waited until we knew he was breathing again and things were fine, then I kissed him on the cheek and left him there. When I look back on those days I do not know how we survived carrying more than the weight of the world on our backs.
Lately I tear up on a daily basis looking at my family. I am so grateful for them but also grateful to be so far from those dark days. One of my favorite things to say is that nothing can be harder than what we have already done and I believe it. If this time last year didn't kill us - NOTHING will!
I have a messy house, I don't have much free money anymore, I have stretch marks and a constantly sore back. I have a to do list miles long that I ignore. But I have such amazing babies. They make me laugh every single day. Our house is loud, active, crazy, and overwhelming. We have nurses and therapists around constantly. And I am thankful for every single part of that. Yes I complain, yes I want to stay bed in the mornings, yes I miss traveling.... but I am so in love with my life now that all of that seems like a distant memory.
Tomorrow I am cooking a massive Thanksgiving meal. We are having a turkey (that refuses to thaw), pastry & dressing (all homemade), green bean casserole, a few other dishes and a pumpkin pie. And it's just me, Brian, and the nurse. Maybe Neva and Matthew will eat some. We are getting our Christmas tree today and will start decorating it tonight. Part of me thinks it's crazy to do all of this, just get a frozen lasagna and make life easy. I can't do that though, this is my family, this is our Thanksgiving, our FIRST Thanksgiving as a family. This is the family I waited forever for and I want to do it right. I want to create memories and traditions for my children starting now. That way by the time they are old enough to remember I will have had enough practice that the meal is actually yummy!!!
For me right now thankful means my heart is bursting with emotion. Sorrow for how bad things were last year, joy, thankfulness, love for where we are now. Excitement and hope for where we are going. When you look at your babies or your family hug them extra hard, for a few seconds try not to take the day for granted, not everyone is surrounded by their families at a table full of food. Even though it was my norm for 33 years, it only took 1 year for it NOT to happen, and I will never be the same.
Love you all!
Wednesday, November 23, 2011
Thursday, November 3, 2011
6 Months (really 8) and a high five!!
Talking (writing) about the babes is my most favorite thing to do. Finding the time/energy to do it at the end of the day is not my most favorite thing to do. That is why the blog goes weeks without an update ... I have lots to say but not so lots of the time it takes to upload a picture, organize my thoughts, etc.
I did not update on Jackson's 6 month anniversary home so I will do it now on his 8 month. Jackson is a living breathing miracle to everyone who has had the pleasure of meeting him. For those of you that remember, Jackson is currently a silent baby but all it takes is one of those huge smiles and a bat of his eyelashes and you are in love. It will amaze you how fast you learn to read his face or eyes and you know without a doubt what he is trying to tell you. He recently picked up a new therapy (occupational) and she was doubtful about his case initially due to the distance to our house and his "rating" (yes the state rates babies) at his evaluation. After their first session together she told me that the baby she saw was not the baby she was prepared for, he was so much more in every aspect that anything that was on paper about him. Then that night she called me from her home to tell me that she could not stop thinking of him and that she knew that God had led her to take his case because SHE needed him in her life. Seriously folks - people are IN LOVE with our baby. Anyway, back to the subject at hand...
Medically Jackson could not be in a better place. He breaths on his own 24/7 which is the best we could hope for at this point. He requires a tiny bit of oxygen when he sleeps but it's nothing to fret over. We are down to two medicines, one to control reflux and one to strengthen his lungs. In September he spent a few days at CHOP and we learned that his airway has grown and is healing itself nicely. The hope that he will not need airway reconstructive surgery is still in sight, his surgeon is very pleased by what is happening. Not everyone gets this hope. If a baby can outgrow the issue on their own most of the time it is by age 2. We will know more this time next year but for now it's out of our heads.
When Jackson came home developmentally he was classified as a newborn. An 8 month old newborn. He had no muscle tone in his body whatsoever. Today he can sit up (not perfectly but I will take it) and hold/reach/play with a toy. He can also bend over at the waist, grab a toy, and sit back up with it. These things are huge steps because he has the weight/body size of a 16 month old, but the strength of a 6-7 month old. If he is holding onto something he can hold his weight on his feet (fake standing). He jumps like crazy in his jumper and he is starting to take small steps backwards in his walker. Again huge. Until two weeks ago there were sentences floating around my house like "maybe he will walk..." now it has turned to "when he walks...". He reaches for toys, he can take things out of a container and sometimes put them back in. And just this week he started giving high five. It was enough for me, Nicole, and our nurse on duty to jump up and down and scream. You have to watch very closely for him to do something, his high five isn't a open handed smack. It's more of a some fingers extended very slow touch of your hand. But that's how he starts things...slow and unsure until he is confident.
Two personality traits are becoming promienent right now and in most ways it's more good news. Jackson is aware of everything around him. If you introduce something new into his world he finds it and is obsessed with it until he figures it out. If he hears a noise in the next room, if he gets a new toy, if a toy doesn't make a noise like it has in the past (b/c the batteries are dead and we can't get around to replacing them!), he picks up on every detail. HUGE PEOPLE. Second, he is a strong willed (we knew this) stubborn little boy taking control of his world. Jackson doesn't have a voice so we have to give him ways of having control. We now present him with two toys to choose from, when he is blatantly "telling" us to stop what we are making him do we stop. We have to respect his world. He knows what he wants and even without vocalizing he tells us. The bad part of this is when it comes to his feeding therapies. Jackson has decided that he is in control and he wants it done his way. AKA - don't try to put something in my mouth, I will do it. His hand/eye coordination is so good now that he can snatch a spoon out of our hands in a heartbeat. He swipes our hands away, he pushes on our hands, anything he can do to be in control of that spoon. (More on feeds in a bit) This is frustrating at times because to better help him we need to be in control. We are working on teaching him "my turn" and "your turn". We do it our way a few times and then he gets to do it his way. We apply this to almost everything in his life these days!
Last but not least...the dreaded feeding conversation. After a boatload of therapists and money spent (all worth it) it has been determined that no one knows why Jackson won't swallow. It seems the functionality is there, he swallowed before the trach, after I combed through every detail of his life, activities, and even pictures post trach we determined he swallowed for a few days after the trach. Regardless when we brought him home he was not swallowing and had such an intense oral aversion that you could not even kiss him on the cheek without a total meltdown. Aversions are not pretty or fake. They are true fears developed inside of a person. It's your brains way of protecting yourself from what you think is painful or scary. This is the hardest part for me as his mom. Jackson was not born this way. Between the months of November - February things happened to him inside/around/near his mouth & face that were so traumatic that his brain believes it has to protect that area now. The first month that he was home he kept his arms bent up to his face, his hands wide open literally covering his lower face from us. Any attempt to move his hand or arm was torture for him. Fast forward to today and we can smother that whole face/lips with kisses. We can put lotion on his face, he mouths EVERYTHING he gets his hands on, he chews his fingers, and we are able to put tastes of foods (mainly yogurt) into his mouth. He moves them around with his tongue and eventually pushes it all back out but he loves it. He will put a spoon so far back into his mouth he gags himself sometimes! We work on cheek, lip, and tongue stretches when he allows. He isn't using his muscles for things like eating or talking so we have to keep them engaged as best as we can. The hope and prayer (that wakes me from a dead sleep at 3am some mornings) is that we just keep going until one day he realizes it's ok to swallow. It won't hurt him. We are realistic though and this accomplishment will be years in the making. Feeding is one of the toughest hurdles to overcome for a small one unfortunately.
That's that. Jackson is thriving at home and so are we. It is hard to always stay positive and see how grateful we should be. There are a lot of "why me" (even though it's not me in pain or working you know?) or "why us" or other pity party moments, I really do try to remember that I have more than so many parents in our situation have. I get to wake up and fight along side of him every morning and many did not have that outcome. In Jackson's short life we have been to the lowest depths and the highest of highs. Regardless I KNOW the dark days are beyond us and though the road is long, it is going to be full of heart bursting moments!!!
I did not update on Jackson's 6 month anniversary home so I will do it now on his 8 month. Jackson is a living breathing miracle to everyone who has had the pleasure of meeting him. For those of you that remember, Jackson is currently a silent baby but all it takes is one of those huge smiles and a bat of his eyelashes and you are in love. It will amaze you how fast you learn to read his face or eyes and you know without a doubt what he is trying to tell you. He recently picked up a new therapy (occupational) and she was doubtful about his case initially due to the distance to our house and his "rating" (yes the state rates babies) at his evaluation. After their first session together she told me that the baby she saw was not the baby she was prepared for, he was so much more in every aspect that anything that was on paper about him. Then that night she called me from her home to tell me that she could not stop thinking of him and that she knew that God had led her to take his case because SHE needed him in her life. Seriously folks - people are IN LOVE with our baby. Anyway, back to the subject at hand...
Medically Jackson could not be in a better place. He breaths on his own 24/7 which is the best we could hope for at this point. He requires a tiny bit of oxygen when he sleeps but it's nothing to fret over. We are down to two medicines, one to control reflux and one to strengthen his lungs. In September he spent a few days at CHOP and we learned that his airway has grown and is healing itself nicely. The hope that he will not need airway reconstructive surgery is still in sight, his surgeon is very pleased by what is happening. Not everyone gets this hope. If a baby can outgrow the issue on their own most of the time it is by age 2. We will know more this time next year but for now it's out of our heads.
When Jackson came home developmentally he was classified as a newborn. An 8 month old newborn. He had no muscle tone in his body whatsoever. Today he can sit up (not perfectly but I will take it) and hold/reach/play with a toy. He can also bend over at the waist, grab a toy, and sit back up with it. These things are huge steps because he has the weight/body size of a 16 month old, but the strength of a 6-7 month old. If he is holding onto something he can hold his weight on his feet (fake standing). He jumps like crazy in his jumper and he is starting to take small steps backwards in his walker. Again huge. Until two weeks ago there were sentences floating around my house like "maybe he will walk..." now it has turned to "when he walks...". He reaches for toys, he can take things out of a container and sometimes put them back in. And just this week he started giving high five. It was enough for me, Nicole, and our nurse on duty to jump up and down and scream. You have to watch very closely for him to do something, his high five isn't a open handed smack. It's more of a some fingers extended very slow touch of your hand. But that's how he starts things...slow and unsure until he is confident.
Two personality traits are becoming promienent right now and in most ways it's more good news. Jackson is aware of everything around him. If you introduce something new into his world he finds it and is obsessed with it until he figures it out. If he hears a noise in the next room, if he gets a new toy, if a toy doesn't make a noise like it has in the past (b/c the batteries are dead and we can't get around to replacing them!), he picks up on every detail. HUGE PEOPLE. Second, he is a strong willed (we knew this) stubborn little boy taking control of his world. Jackson doesn't have a voice so we have to give him ways of having control. We now present him with two toys to choose from, when he is blatantly "telling" us to stop what we are making him do we stop. We have to respect his world. He knows what he wants and even without vocalizing he tells us. The bad part of this is when it comes to his feeding therapies. Jackson has decided that he is in control and he wants it done his way. AKA - don't try to put something in my mouth, I will do it. His hand/eye coordination is so good now that he can snatch a spoon out of our hands in a heartbeat. He swipes our hands away, he pushes on our hands, anything he can do to be in control of that spoon. (More on feeds in a bit) This is frustrating at times because to better help him we need to be in control. We are working on teaching him "my turn" and "your turn". We do it our way a few times and then he gets to do it his way. We apply this to almost everything in his life these days!
Last but not least...the dreaded feeding conversation. After a boatload of therapists and money spent (all worth it) it has been determined that no one knows why Jackson won't swallow. It seems the functionality is there, he swallowed before the trach, after I combed through every detail of his life, activities, and even pictures post trach we determined he swallowed for a few days after the trach. Regardless when we brought him home he was not swallowing and had such an intense oral aversion that you could not even kiss him on the cheek without a total meltdown. Aversions are not pretty or fake. They are true fears developed inside of a person. It's your brains way of protecting yourself from what you think is painful or scary. This is the hardest part for me as his mom. Jackson was not born this way. Between the months of November - February things happened to him inside/around/near his mouth & face that were so traumatic that his brain believes it has to protect that area now. The first month that he was home he kept his arms bent up to his face, his hands wide open literally covering his lower face from us. Any attempt to move his hand or arm was torture for him. Fast forward to today and we can smother that whole face/lips with kisses. We can put lotion on his face, he mouths EVERYTHING he gets his hands on, he chews his fingers, and we are able to put tastes of foods (mainly yogurt) into his mouth. He moves them around with his tongue and eventually pushes it all back out but he loves it. He will put a spoon so far back into his mouth he gags himself sometimes! We work on cheek, lip, and tongue stretches when he allows. He isn't using his muscles for things like eating or talking so we have to keep them engaged as best as we can. The hope and prayer (that wakes me from a dead sleep at 3am some mornings) is that we just keep going until one day he realizes it's ok to swallow. It won't hurt him. We are realistic though and this accomplishment will be years in the making. Feeding is one of the toughest hurdles to overcome for a small one unfortunately.
That's that. Jackson is thriving at home and so are we. It is hard to always stay positive and see how grateful we should be. There are a lot of "why me" (even though it's not me in pain or working you know?) or "why us" or other pity party moments, I really do try to remember that I have more than so many parents in our situation have. I get to wake up and fight along side of him every morning and many did not have that outcome. In Jackson's short life we have been to the lowest depths and the highest of highs. Regardless I KNOW the dark days are beyond us and though the road is long, it is going to be full of heart bursting moments!!!
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