On the way to Adeline's surgery, Savannah stated that she wanted to play at the hospitals playground. Alex was planning on taking her and Lila to play and eat lunch while I got Adeline through her pre-op. Immediately after telling Savannah the plan she became very distressed.
"We can't eat our lunch out at the playground!"
"Why not?"
"The bees will try to sting us!"
"No they won't"
"Yes they will. They will get their stingers out!"
"Sweetie, there aren't that many bees around."
"Yes there are. Look outside, isn't it a nice day. Bees like nice days."
"Why do you think bees want to sting you."
"Well, peanut butter is brown and so is honey. They will think I have a honey sandwich."
We try to contain our laughter because this is clearly a serious issue to the one in the backseat.
"Okay, we will eat lunch in the cafeteria."
"Well, we better not buy any lollipops at the hospital either. Even if they have a whole bunch, we better not get any."
"Why?"
"Because the bees will think they smell like flowers and try to sting us again."
That's my girl. Always thinking things through.
Thursday, May 15, 2008
Wednesday, May 14, 2008
Home Again
That's right, Adeline cruised through her surgery today and is sleeping peacefully in her own bed tonight.
We were considered an outpatient surgery and were told to arrive at 12:30. I packed a bag anyway knowing that Adeline would most likely have an oxygen requirement after being vented for the procedure. By the way, the procedure was putting stints in her tear ducts so that her eyes will tear and drain normally.
Adeline was all smiles when we arrived. They were a bit ahead of schedule which caused us to have Alex, Savannah and Lila Grace wait around instead of heading back home (they drove the girl and I down to the hospital because Savannah wanted to go). Adeline was dressed in hospital attire and playing on her stretcher in no time. After meeting with the wonderful Anesthesiologist (who adored her and her name), my fears were put at bay. He was aware of her history and chronic lung disease/BPD. However, he said that she was most likely clear of her lung disease which is still hard for me to believe even though it is most likely true. He planned for her to come off of the O's quickly after surgery and go home like all the average kids would do in this situation. I was still skeptical but enjoyed lumping her into the population of "average/typical" kids during our conversation.
Because Adeline is so warm and friendly with strangers, there was no need to administer the nasal spray to make her "loopy." I handed her off to the anesthesiologist to carry into the OR (which was welcomed with open arms and obviously rarely done) instead of wheeling her in, groggy and out of sorts. She gave me a big smile and snuggled into her new found friend. The last words I heard as I was walking out of pre-op was, "You really are the sweetest baby aren't you?" It warmed my heart as I knew she was in good hands.
The family hung out in the waiting room and an hour or so later the doc was out telling us everything went well. Because it was the end of the day, they let the whole family sit at the bedside while waiting for Miss Belle to wake up. Seeing her brought back the NICU because her face was puffy and smooshed up due to the ventilator mask and tube that they had yet to pull. Finally, she came to and we were on our way home knowing that we have the equipment at home if for some reason she can't stay saturated.
Oddly enough, Adeline was in great spirits. The nurse mentioned that eye procedures produce the most cranky kids. She told us to expect Adeline to rub, itch and tug at her eyes. She did none of that. In fact, she got home and stood up to walk across the room with no encouragement time and time again. She was even clapping her hands to her favorite music. It was as if she wasn't under general anesthesia few short hours before.
Her sats look good and I expect that she will wake up in the morning as if nothing happened. All three of our girls were troopers today as it was long for everyone. Miss Belle continues to prove me wrong and, for today, was lumped into the "normal kids" group requiring no extra care or attention.
All smiles
Giving her Bunny loves
Lila Grace trying to decide what she thinks about her sister going under the knife
Savannah telling Lila stories while they wait
Looking like she is back in the NICU
Home and happy
We were considered an outpatient surgery and were told to arrive at 12:30. I packed a bag anyway knowing that Adeline would most likely have an oxygen requirement after being vented for the procedure. By the way, the procedure was putting stints in her tear ducts so that her eyes will tear and drain normally.
Adeline was all smiles when we arrived. They were a bit ahead of schedule which caused us to have Alex, Savannah and Lila Grace wait around instead of heading back home (they drove the girl and I down to the hospital because Savannah wanted to go). Adeline was dressed in hospital attire and playing on her stretcher in no time. After meeting with the wonderful Anesthesiologist (who adored her and her name), my fears were put at bay. He was aware of her history and chronic lung disease/BPD. However, he said that she was most likely clear of her lung disease which is still hard for me to believe even though it is most likely true. He planned for her to come off of the O's quickly after surgery and go home like all the average kids would do in this situation. I was still skeptical but enjoyed lumping her into the population of "average/typical" kids during our conversation.
Because Adeline is so warm and friendly with strangers, there was no need to administer the nasal spray to make her "loopy." I handed her off to the anesthesiologist to carry into the OR (which was welcomed with open arms and obviously rarely done) instead of wheeling her in, groggy and out of sorts. She gave me a big smile and snuggled into her new found friend. The last words I heard as I was walking out of pre-op was, "You really are the sweetest baby aren't you?" It warmed my heart as I knew she was in good hands.
The family hung out in the waiting room and an hour or so later the doc was out telling us everything went well. Because it was the end of the day, they let the whole family sit at the bedside while waiting for Miss Belle to wake up. Seeing her brought back the NICU because her face was puffy and smooshed up due to the ventilator mask and tube that they had yet to pull. Finally, she came to and we were on our way home knowing that we have the equipment at home if for some reason she can't stay saturated.
Oddly enough, Adeline was in great spirits. The nurse mentioned that eye procedures produce the most cranky kids. She told us to expect Adeline to rub, itch and tug at her eyes. She did none of that. In fact, she got home and stood up to walk across the room with no encouragement time and time again. She was even clapping her hands to her favorite music. It was as if she wasn't under general anesthesia few short hours before.
Her sats look good and I expect that she will wake up in the morning as if nothing happened. All three of our girls were troopers today as it was long for everyone. Miss Belle continues to prove me wrong and, for today, was lumped into the "normal kids" group requiring no extra care or attention.
All smiles
Giving her Bunny loves
Lila Grace trying to decide what she thinks about her sister going under the knife
Savannah telling Lila stories while they wait
Looking like she is back in the NICU
Home and happy
Sunday, May 11, 2008
Happy Mother's Day
This is a day when I revel in my children and hope with every ounce of my being that I am raising them right! I am thankful for my girls, my wonderful husband who sent them into me holding roses this morning, and my fabulous mommy friends who always lend an ear or hand. I recognize this moment, this day, and the upcoming years with the girls still at home, as the prime of my life.
I still am in awe that God chose me to mother these three beautiful girls. I held onto that in the NICU. . .No matter the outcome, God chose me because he believed I was the best mommy for these girls. They have profoundly changed me for the better, I pray when they look back over their childhood they see a devoted mother who loved them (for lack of better words, I will use Savannah's) as big as the Earth and Heaven all squished together.
As one mom wrote to me today, "We can't dwell too much on the future or we won't be able to enjoy today." I agree, the future can loom over you like a dark cloud. Why are so hung up on the future? Another mommy friend unexpectedly dropped off a book to me this morning. The first line reads "We dream our lives in grand gestures, but we live our lives in small moments." (Small Graces by Kent Nerburn) I couldn't say it better myself. I have big dreams for my girls but I realize what melts my heart is often found in the middle of dinner, bath time or driving in the car.
Today I embrace my girls and the small graces in my life!
Savannah and Mommy standing in the grass getting their picture taken
Savannah and Mommy at the Mother's Day Tea
Savannah's recipe for Mommy's favorite dish (a salad from Bravo Pizza! click on the picture to read what she said)
Savannah singing I'm a Little Teapot
I still am in awe that God chose me to mother these three beautiful girls. I held onto that in the NICU. . .No matter the outcome, God chose me because he believed I was the best mommy for these girls. They have profoundly changed me for the better, I pray when they look back over their childhood they see a devoted mother who loved them (for lack of better words, I will use Savannah's) as big as the Earth and Heaven all squished together.
As one mom wrote to me today, "We can't dwell too much on the future or we won't be able to enjoy today." I agree, the future can loom over you like a dark cloud. Why are so hung up on the future? Another mommy friend unexpectedly dropped off a book to me this morning. The first line reads "We dream our lives in grand gestures, but we live our lives in small moments." (Small Graces by Kent Nerburn) I couldn't say it better myself. I have big dreams for my girls but I realize what melts my heart is often found in the middle of dinner, bath time or driving in the car.
Today I embrace my girls and the small graces in my life!
Savannah and Mommy standing in the grass getting their picture taken
Savannah and Mommy at the Mother's Day Tea
Savannah's recipe for Mommy's favorite dish (a salad from Bravo Pizza! click on the picture to read what she said)
Savannah singing I'm a Little Teapot
Finally Walking
Due to many requests, I have put together a video of Adeline taking some first steps. She can walk, stand up without assitance and change direction in mid-stride. This doesn't mean her primary mode of getting around is walking. It takes continual encouragement and patience. She has yet to "buy in" and knows that crawling is faster and easier. Although she doesn't always walk, Adeline is getting closer. Just today she came walking around the corner. She loves to show off for visitors, so please come and visit. This Mommy is all out of tricks and walking to me has become boring for the little one.
Saturday, May 10, 2008
A Day in the Life
Lately, I seem to forget to pull out the camera. Either we are constantly on the go or the battery isn't charged. Either way, I feel as if I am not catching the "moments."
For example, when I think of Lila Grace playing upstairs, I have a vivid picture of her putting markers in the toaster. When people ask what her favorite activity is, I quickly report that toasting markers is top of her list. More than not she is sitting on the table but a few nights ago I caught her sitting appropriately while methodically arranging her markers. I don't know what the draw is but after watching her do it countless times, there is clearly a goal in mind.
While Lila was toasting markers, I was working with Adeline on sensory issues. During her last OT session, we pulled out shredded paper. At first she wouldn't touch it but thanks to that patience of her therapist she would reach out and touch a piece. After praising, distracting and tying the paper to all of her favorite toys, Adeline was touching, pulling and removing the shreds from her play space. I tried to follow it up with a mini session before bed and was quite successful. I was surprised how little it bothered her. Of course, I had to work on my issues of having it spread to one end of her room to the other.
The night ended with bottles on the floor. Both girls fell apart which meant either bottles on the floor or one cries while I feed the other. It was kind of cute how they snuggle up to one another.
These are the moments that make me smile at the end of the day.
For example, when I think of Lila Grace playing upstairs, I have a vivid picture of her putting markers in the toaster. When people ask what her favorite activity is, I quickly report that toasting markers is top of her list. More than not she is sitting on the table but a few nights ago I caught her sitting appropriately while methodically arranging her markers. I don't know what the draw is but after watching her do it countless times, there is clearly a goal in mind.
While Lila was toasting markers, I was working with Adeline on sensory issues. During her last OT session, we pulled out shredded paper. At first she wouldn't touch it but thanks to that patience of her therapist she would reach out and touch a piece. After praising, distracting and tying the paper to all of her favorite toys, Adeline was touching, pulling and removing the shreds from her play space. I tried to follow it up with a mini session before bed and was quite successful. I was surprised how little it bothered her. Of course, I had to work on my issues of having it spread to one end of her room to the other.
The night ended with bottles on the floor. Both girls fell apart which meant either bottles on the floor or one cries while I feed the other. It was kind of cute how they snuggle up to one another.
These are the moments that make me smile at the end of the day.
Thursday, May 8, 2008
Only Time Will Tell
If I had a dollar for every time someone said, "Only time will tell," or "It is too early to tell," I would be able to gas up my car without cringing. As I sit and watch my girls developing, it is clear that Adeline's outcome is still hanging in the balance. As they approach two - can you believe it? - Lila Grace is taking off and leaving Adeline behind.
Lila Grace is a true toddler. She engages in silly games, throws tantrums, follows directions and is becoming much more self reliant. Adeline, on the other hand, is not. Yes, she is making progress and at times, tremendous progress. She is beginning to walk, stand up without assistance, babble more and bring things to me to do for her. However, this is far behind where she should be. There are many times when is zoned out, not responding to her name and acts as if she has no idea what you are talking about. She can't touch grass, loose ribbons, and falls apart when hearing the vacuum, blender or lawn mower. There are days when she lights up and others where she seems to just go through the motions. One day she will eat (finger feed) and for the next three she will throw a fit in her highchair. What does it all mean?
Just recently Alex and I had an Autism scare. He brought it up and I refuted it. A day later I was panicked and talking to everyone who knows Adeline, asking their opinion. The consensus, not Autism, not yet at least. I feel good about that but realize that Alex and I both are wavering in our belief of normalcy. We, as do her therapists, believe it is still within reach. However, we are more concerned than ever.
I critique her more, push her harder, and work her to the point of frustration. I don't know who is more frustrated, me, her or her sisters sitting on the sidelines. I guess I am ready for the diagnosis, if is there is going to be one. I finally understand those parents who find comfort in a diagnosis. I never really got that before. But after almost two years of worry, I just want to know! What does the future hold. Will she mainstream? Will she go to college? Will she marry? Not that she has to do these things, I just want her to have the choice.
Like all parents, I want to give her to world. After all, that is what she gave me. She taught me to believe in miracles. She is the unbelievable. I get the privilege to watch her grow and develop, defying so many odds. I want the same for her. I want her to know what it is love deeply, hope with every ounce of her soul and understand that God gave her life!
Oh, Miss Bellie Merellie, when are we going to know?
Learning how to go down the slide on her belly at a Gymboree birthday party!
Lila Grace is a true toddler. She engages in silly games, throws tantrums, follows directions and is becoming much more self reliant. Adeline, on the other hand, is not. Yes, she is making progress and at times, tremendous progress. She is beginning to walk, stand up without assistance, babble more and bring things to me to do for her. However, this is far behind where she should be. There are many times when is zoned out, not responding to her name and acts as if she has no idea what you are talking about. She can't touch grass, loose ribbons, and falls apart when hearing the vacuum, blender or lawn mower. There are days when she lights up and others where she seems to just go through the motions. One day she will eat (finger feed) and for the next three she will throw a fit in her highchair. What does it all mean?
Just recently Alex and I had an Autism scare. He brought it up and I refuted it. A day later I was panicked and talking to everyone who knows Adeline, asking their opinion. The consensus, not Autism, not yet at least. I feel good about that but realize that Alex and I both are wavering in our belief of normalcy. We, as do her therapists, believe it is still within reach. However, we are more concerned than ever.
I critique her more, push her harder, and work her to the point of frustration. I don't know who is more frustrated, me, her or her sisters sitting on the sidelines. I guess I am ready for the diagnosis, if is there is going to be one. I finally understand those parents who find comfort in a diagnosis. I never really got that before. But after almost two years of worry, I just want to know! What does the future hold. Will she mainstream? Will she go to college? Will she marry? Not that she has to do these things, I just want her to have the choice.
Like all parents, I want to give her to world. After all, that is what she gave me. She taught me to believe in miracles. She is the unbelievable. I get the privilege to watch her grow and develop, defying so many odds. I want the same for her. I want her to know what it is love deeply, hope with every ounce of her soul and understand that God gave her life!
Oh, Miss Bellie Merellie, when are we going to know?
Learning how to go down the slide on her belly at a Gymboree birthday party!
Monday, May 5, 2008
A Rainy Day in April
Before April gets completely away from us, I wanted to share some video of the girls. In addition to many rainy days, there were a fair number of days that both girls were very cranky or sick. When I was ready to pull my hair out I would always try to crank the music and engage them in some sort of play. They have always responded well to music and in either case, it makes their fussing less noticeable. The video below was on one of those days.
There were many hours of riding and pushing the cars back and forth through the house last month. Surprisingly, Lila Grace can even push Savannah when they weren't dancing to the music. The cars were supposed to turn into an outside toy but we are having too much fun with them indoors. Adeline loves their music and is often found sitting by one clapping her hands to the tunes.
Finally, Lila Grace just took up jumping which surpasses Savannah's abilities at the same age. She is much more physically able and willing than I ever expected at this point and time. She is fearless and scarily strong. I can't believe she can get both feet off of the ground.
There were many hours of riding and pushing the cars back and forth through the house last month. Surprisingly, Lila Grace can even push Savannah when they weren't dancing to the music. The cars were supposed to turn into an outside toy but we are having too much fun with them indoors. Adeline loves their music and is often found sitting by one clapping her hands to the tunes.
Finally, Lila Grace just took up jumping which surpasses Savannah's abilities at the same age. She is much more physically able and willing than I ever expected at this point and time. She is fearless and scarily strong. I can't believe she can get both feet off of the ground.
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