17 months...
"Never be ashamed of the scars life has left you with. A scar means the hurt is over, the wound is closed, you endured the pain, and God has healed you."
This month has been a bit traumatic for me...I have been counting down all week the day until she turned 17months...not because of her age, but because it has been exactly 1 year since her open heart surgery. Just thinking of it brings tears to my eyes every time. What she had to endure in that hospital is a big part of what we are still trying to fix today. It was too much for her, overwhelming her little mind and body. She was on sensory overload and she still is keeping her distance from most people in her life. I look back at that page, her surgery page on this blog, and it amazes me how tiny she was and yet how strong. She has so many scars, physical and mental...at least she won't remember the operation and the hospital stay...I will always remember it, I need to to realize why she is so protective of herself and then to help her trust and relax around people. We are learning so much together.
Its interesting to me that the surgeons/cardiologists felt that we had to do the surgery, immediatly because she wasn't drinking enough in a day for the calories she needed...and here we are a year later and we are still in that struggle. I look back and realize that she is still drinking the same amount of ounces she drank a year ago! The only difference is that we have added a high calorie drink to the mix to help her gain weight. She can still never drink more than 3oz at a time without vomiting. She still gets up or gets fed 2x every night. She is still tiny, only 21 lbs 5oz and 30 inches now.
She did get very strong after surgery though and within a few months was able to catch up on all she was behind on, like rolling over and sitting up. Now she runs everywhere and its us trying to catch up to her! She never stops except to take her nap or go to sleep. She is an early riser, with the dawn, and there is no slowly getting up its- let's go NOW time for her! She never wants to stop to eat or drink. We are supposed to be starting in a feeding clinic, but they cannot fit me in...I am looking into other places that offer feeding as well as speech help. She is still not talking much, we can understand some, but most things she gets frustrated that we cannot figure out. So, a little help in that area couldn't hurt I figure. Overall, the GI said she is great and he is please enough not to see us for 6months. The ENT said her ears are still ok, a little fluid but not enough for tubes, yet. Her cardiologist appt is wednesday, I can add later about that :)
She started to put megablocks together and is adding a few things to her "menu". She likes noodles, as long as they don't have a lot of sauce on them. She does usually eat rice as well. Its just a little bit at a time, but it's her trying the foods and eating them that is the accomplishment, not the volume right now.
Her hair is finally growing a bit and sticks straight up on top now, and Amanda noticed it is getting a bit darker as it comes in thicker. She now has 3 out of 4 canines in and those are giving her some painful days and a runny nose I think. She still loves her books and can sit and look at them for a long time, as long as we remind her not to eat them, yes, she loves to eat paper!
Overall, she is doing great! Thanks everyone for prayers and well thoughts for her. We appreciate it all.
Its interesting to me that the surgeons/cardiologists felt that we had to do the surgery, immediatly because she wasn't drinking enough in a day for the calories she needed...and here we are a year later and we are still in that struggle. I look back and realize that she is still drinking the same amount of ounces she drank a year ago! The only difference is that we have added a high calorie drink to the mix to help her gain weight. She can still never drink more than 3oz at a time without vomiting. She still gets up or gets fed 2x every night. She is still tiny, only 21 lbs 5oz and 30 inches now.
She did get very strong after surgery though and within a few months was able to catch up on all she was behind on, like rolling over and sitting up. Now she runs everywhere and its us trying to catch up to her! She never stops except to take her nap or go to sleep. She is an early riser, with the dawn, and there is no slowly getting up its- let's go NOW time for her! She never wants to stop to eat or drink. We are supposed to be starting in a feeding clinic, but they cannot fit me in...I am looking into other places that offer feeding as well as speech help. She is still not talking much, we can understand some, but most things she gets frustrated that we cannot figure out. So, a little help in that area couldn't hurt I figure. Overall, the GI said she is great and he is please enough not to see us for 6months. The ENT said her ears are still ok, a little fluid but not enough for tubes, yet. Her cardiologist appt is wednesday, I can add later about that :)
She started to put megablocks together and is adding a few things to her "menu". She likes noodles, as long as they don't have a lot of sauce on them. She does usually eat rice as well. Its just a little bit at a time, but it's her trying the foods and eating them that is the accomplishment, not the volume right now.
Her hair is finally growing a bit and sticks straight up on top now, and Amanda noticed it is getting a bit darker as it comes in thicker. She now has 3 out of 4 canines in and those are giving her some painful days and a runny nose I think. She still loves her books and can sit and look at them for a long time, as long as we remind her not to eat them, yes, she loves to eat paper!
Overall, she is doing great! Thanks everyone for prayers and well thoughts for her. We appreciate it all.
I sent this to another mommy who adopted about our struggles and blessings...A letter of hope and encouragement.
I thought I would put it on our site too since it's about our little Anna! Enjoy, Anna at 16 months:
"I want to share what I have learned over the past 16mo...
It went fast, but it went so slow sometimes too...
Don't compare your preemie to other babies, its dissapointing and will stress you out.
I was a nanny for 15mo, "T" was 16lbs when I met him at 3mo old! Anna was 17lbs at a year! T was strong and smart, he learned to talk early and knew animal names and sounds. He could do puzzles and color with me, stack blocks, throw balls, kick balls, do sign language, wave bye bye, blow kisses.... I focused a lot on him and my older two children for probably the first year of Anna's life.
It was unfair to Anna. She was smaller, she had a much harder start. She was born on drugs with two heart defects, a hernia and other issues. She couldn't eat like him, she had reflux and started vomiting at 7months old. She wanted to be her own person, she had her own personality and would do things when she was good and ready. She is unique and beautiful and I am so proud of how far she has come. Her future is unknown to us, but we are finding the help she needs to make that future bright and fulfilling for her. She is smart, even though she has trouble communicating, she can understand what we say and want. She knows what a book is and when I say bye bye she runs to the gate. She is learning to do new things every day, she now throws balls and plays on her drum.
I think time and patience and for her to learn new things will help her tremendously. She is babbling constantly, though not saying words that are quite recognizable yet and I think she said Dylan yesterday, in her own way.
I also have to remember that she came into this world very strong and determined to survive and screaming, that it was not a pleasant experience for her...and that continued for 9mo of her life. I have to remember that she was not able to find comfort in anyone or anything and even though that used to make me really sad and feeling like a bad mommy, I have now realized it was her way to control the situation and provide herself with self preservation. She was so traumatized that she was incapable of trusting anyone. She feared pain and kept herself from feeling pain, either by no contact with people, or not eating. Whichever pain she wanted to avoid.
After 9 long months, she trusted me enough to allow me to hold her and protect her. I was the only one who she trusted enough that she could break down the wall she had built for herself. Now, months later she is slowly trusting more family members as she is learning that we love her and would never harm her.
It is hard to see my little girl suffer so much to understand the world around her. She is doing so well now, even though eating is something we need to really work on...but as long as she still vomits or has reflux, that pain she feels will remain and she willl not want to eat.
I think I just wanted to tell you, that our babies are unique, even to the preemie world that we communicate with. The drugs have affected their ability to understand the world and sometimes its overwhelming for them. Most babies outgrow reflux and vomiting by 9-12 mo, why not Anna? Is it physically something she is incapable of doing?
I see her energy level and she is constantly wanting to figure things out. Maybe not on the timeline that drs and early intervention or other OTs want from her, but she is figuring them out. I dont know what I would have done without her and I am a much better mommy and knowledgeable mommy because of her. She has taught me a lot, maybe I dont know why I am learning all this just yet, but time will tell and there is always a reason...Tiny and mighty! That's my girl!
Sheri"
So, that's our girl! Anna has hit 21 pounds which is actually incredible weight gain in 4 months for a toddler over a year old. She is still gaining like an infant...mostly because of the high calories/protein she is drinking everyday. I expect for her to slow down a bit now...but that's ok. She has already gained more in her second year than Amanda did as a baby! We still are hoping to avoid that scary g-tube and hoping to get her in a feeding clinic to help us show her food isn't a scary thing. She is now doing so many things that she couldn't do just a month ago. We are so proud of her!
I thought I would put it on our site too since it's about our little Anna! Enjoy, Anna at 16 months:
"I want to share what I have learned over the past 16mo...
It went fast, but it went so slow sometimes too...
Don't compare your preemie to other babies, its dissapointing and will stress you out.
I was a nanny for 15mo, "T" was 16lbs when I met him at 3mo old! Anna was 17lbs at a year! T was strong and smart, he learned to talk early and knew animal names and sounds. He could do puzzles and color with me, stack blocks, throw balls, kick balls, do sign language, wave bye bye, blow kisses.... I focused a lot on him and my older two children for probably the first year of Anna's life.
It was unfair to Anna. She was smaller, she had a much harder start. She was born on drugs with two heart defects, a hernia and other issues. She couldn't eat like him, she had reflux and started vomiting at 7months old. She wanted to be her own person, she had her own personality and would do things when she was good and ready. She is unique and beautiful and I am so proud of how far she has come. Her future is unknown to us, but we are finding the help she needs to make that future bright and fulfilling for her. She is smart, even though she has trouble communicating, she can understand what we say and want. She knows what a book is and when I say bye bye she runs to the gate. She is learning to do new things every day, she now throws balls and plays on her drum.
I think time and patience and for her to learn new things will help her tremendously. She is babbling constantly, though not saying words that are quite recognizable yet and I think she said Dylan yesterday, in her own way.
I also have to remember that she came into this world very strong and determined to survive and screaming, that it was not a pleasant experience for her...and that continued for 9mo of her life. I have to remember that she was not able to find comfort in anyone or anything and even though that used to make me really sad and feeling like a bad mommy, I have now realized it was her way to control the situation and provide herself with self preservation. She was so traumatized that she was incapable of trusting anyone. She feared pain and kept herself from feeling pain, either by no contact with people, or not eating. Whichever pain she wanted to avoid.
After 9 long months, she trusted me enough to allow me to hold her and protect her. I was the only one who she trusted enough that she could break down the wall she had built for herself. Now, months later she is slowly trusting more family members as she is learning that we love her and would never harm her.
It is hard to see my little girl suffer so much to understand the world around her. She is doing so well now, even though eating is something we need to really work on...but as long as she still vomits or has reflux, that pain she feels will remain and she willl not want to eat.
I think I just wanted to tell you, that our babies are unique, even to the preemie world that we communicate with. The drugs have affected their ability to understand the world and sometimes its overwhelming for them. Most babies outgrow reflux and vomiting by 9-12 mo, why not Anna? Is it physically something she is incapable of doing?
I see her energy level and she is constantly wanting to figure things out. Maybe not on the timeline that drs and early intervention or other OTs want from her, but she is figuring them out. I dont know what I would have done without her and I am a much better mommy and knowledgeable mommy because of her. She has taught me a lot, maybe I dont know why I am learning all this just yet, but time will tell and there is always a reason...Tiny and mighty! That's my girl!
Sheri"
So, that's our girl! Anna has hit 21 pounds which is actually incredible weight gain in 4 months for a toddler over a year old. She is still gaining like an infant...mostly because of the high calories/protein she is drinking everyday. I expect for her to slow down a bit now...but that's ok. She has already gained more in her second year than Amanda did as a baby! We still are hoping to avoid that scary g-tube and hoping to get her in a feeding clinic to help us show her food isn't a scary thing. She is now doing so many things that she couldn't do just a month ago. We are so proud of her!