Here in PA, they do reviews every three months and adjust services accordingly. The difference is that this review isn't one of those ones where they go through the whole assessment and say "Your child is this far behind" - this one is more like a meeting with the case manager, her "lead" therapist and me. We talk about her progress and what her new goals should be and then we plan.
So that happened on Weds. and we decided that we need PT again. Little Miss is having some balance issues, holds her left foot to the side when she walks, and seems to have some issues with her hips. Nothing majorly alarming, but something we wanted to have checked out, and see what we can do to help her. Some of this could be simply related to her vision issues, or just be a quirk she has right now and will out grow.
We also decided between Speech and Special Instruction. I asked for Speech but both OT and her case manager feel Special Instruction would be best suited for now. And we can pull in Speech later if needed. Addison does have some words, but (and maybe I am wrong) not as many as Blake. While it's hard to not compare them, it's just best to have these things looked at now and make progress on them. She is also "at risk" because of her Cleft Palate for speech delays so this is super important.
For now it looks like we are going to do PT once a month, Special Instruction twice a month and OT once a month. Re-eval in 3 months and decide from there. Should she still qualify based on her needs, within the next 3-6 months, they will start to transition her into the 3 year old program, which is more like a Head Start or Preschool type program to help prep her for school.
I am sure you've heard "most preemies are caught up by age two" and while that is true in some cases, we know that Addison still has some very mild delays. And ya know what, while I beyond a shadow of a doubt want her to "catch up", I am o.k. with this. Ok as in - I am glad we have the resources available to us to help continue to help her and nurture her learning so that she can continue to grow and progress. The important thing is that the gap between where she is and "should" be is getting smaller. It's just taking longer, and that's ok. She is so very smart, and picks up on things so I have no doubt that will continued hard work she will continue to blossom and develop.
One thing for sure is that we are going to have our hands full with her for sure ;)
Thursday, February 28, 2013
Wednesday, February 27, 2013
Being a Preemie Parent
Being a preemie parent changed me in ways I never imagined. I learned what true courage is. What the fight for survival is. And how to handle things I never thought were possible.
I learned what it was like to feel helpless, and at time hopeless. And how to overcome those times.
I learned that not everyone would understand what we were going through, and would sometimes say the wrong thing because they did not know the right thing to say. They just wanted to help.
I learned that surrounding myself with others in similar situations, other preemie parents, would help me get through those tough times. And it would also teach me about life's biggest miracles.
Being a preemie parent has taught me to never take a moment for granted, and to celebrate every milestone regardless of how "small".
I would like to think that this whole experience has made me more aware, and passionate about raising awareness about prematurity, as well as a lot more understand of people around me.
Because of my own children's struggles and differences I've learned you can't judge a book by it's cover. What you see on the outside is likely only the tip of the iceberg.
I've had to rally strength to hold down my child while a doctor or nurse performs a test or stuck them with needle.
I know what it's like to walk out of a hospital with an empty tummy and empty arms, not knowing if you'll every be able to have your babies home with you.
I am honoring the amazing courage and commitment parents of preemies face by celebrating Parents of Preemies Day on Sunday, March 10th. Find out how you can celebrate with me at http://www.facebook.com/parentsofpreemiesday!
I learned what it was like to feel helpless, and at time hopeless. And how to overcome those times.
I learned that not everyone would understand what we were going through, and would sometimes say the wrong thing because they did not know the right thing to say. They just wanted to help.
I learned that surrounding myself with others in similar situations, other preemie parents, would help me get through those tough times. And it would also teach me about life's biggest miracles.
Being a preemie parent has taught me to never take a moment for granted, and to celebrate every milestone regardless of how "small".
I would like to think that this whole experience has made me more aware, and passionate about raising awareness about prematurity, as well as a lot more understand of people around me.
Because of my own children's struggles and differences I've learned you can't judge a book by it's cover. What you see on the outside is likely only the tip of the iceberg.
I've had to rally strength to hold down my child while a doctor or nurse performs a test or stuck them with needle.
I know what it's like to walk out of a hospital with an empty tummy and empty arms, not knowing if you'll every be able to have your babies home with you.
Tuesday, February 26, 2013
Random Ramblings...
Taking a moment to color with Mommy. |
Ever had one of those moments where you feel like your head is spinning, you have so much on your mind and you can barely tread water... Yup, that's where I am at today
Because we've all been sick, I haven't been to the gym. Which means I have not had any "me" time, and it's completely effected my inner peace. It also did not help that the gym called me less then a week from the last time I went and was all "Giiiiiiiirl Where you been? We miss you?" In my mind I was like "cleaning up puke and I really don't have time to chat right now," but I was civil yet still annoyed. I think it's nice that they called but um really, it's only been a few days really. (AND NO I AM NOT INTERESTED IN PAYING FOR A PERSONAL TRAINER RIGHT NOW THANKS! I DON'T NEED THE REMINDER THAT I MIGHT ACTUALLY NEED ONE BECAUSE I AM FAT.)
Jake's work hours have been pretty crappy and he's been on call which means that it's been Mommy 24-7. Don't get me wrong, I wouldn't change it for the world, but Mommy needs a break, just a few seconds to myself where I am not cleaning up a mess or wiping a nose or giving meds or any of that. Not to mention there are a million other things that need to get done around the house, and I just feel like I cannot keep up. The reality is that aside from the needed Mommy Moment, things aren't that bad. They just "feel" that bad. I know you understand what I am saying.
I am grateful that I did have a day or two of help from family which allowed me to get caught up on laundry, and sanitizing, and it does seem that in spite of Mr. Blake now having RSV, we are indeed finally on the mend. Which means as soon as Mommy catches up on some much needed sleep, we should be back to our regular routines.
I am grateful that I did have a day or two of help from family which allowed me to get caught up on laundry, and sanitizing, and it does seem that in spite of Mr. Blake now having RSV, we are indeed finally on the mend. Which means as soon as Mommy catches up on some much needed sleep, we should be back to our regular routines.
This is basically how he has been for a week now. :( |
One really exciting thing is that Addison is back to eating again. She seems like she is doing better then before she got sick, and just so grown up about it. I cannot stand it. I was watching her and Blake the other day and just thinking, my babies are all grown up. I don't know when it happened, but they are such big kids now. I cannot stand it. It never ceases to amaze me.
Addison eating some yummy strawberries. |
Wednesday, February 20, 2013
Should We Have Kept The G-Tube
For a little longer atleast?
This question has been on my mind through out this whole ordeal, but lets look at the big picture...
- Blake and Addison both got sick.
Granted Blake didn't ::knocks on wood:: get as sick as it seemed Addison did. (And I have my suspicions that her diarrhea was escalated by the fact that she has a Nissin Fundo in place and there for it could only come out one way, however without that it's possible it could have been shooting out both ends... still not ideal.) But Blake did not need IV hydration. (It did take a lot of syringes of liquids by mouth and a lot of wrestling though, but we did keep him drinking).
- Addison continued to drink, and even EAT through out this.
In fact, she drank so much the first day that it was hard to believe that she had gotten dehydrated she would not put her cup down. (Yes she too needed a few syringes full by mouth, especially after the initial bout of dehydration, but she was still doing what she needed to do). In fact, while it's not "a lot" or even "enough" for a normal day to day, she has had one and a half containers of purees today alone, plus ice chips and an apple slice or two. Pretty good for a sick kid, I mean come on how much do you want to eat when you aren't feeling well?
- Every medical professional who has seen her since she got sick with this mess has said the same thing... The G-tube would have essentially been the same as what she was drinking by mouth and wouldn't have prevented the dehydration when the end result is that the liquids just won't stay in. Sometimes it just happens and our bodies need the IV fluids to get over the hump.
- She is showing a great interest in wanting to eat more as the days progress.
In the end only time will tell, but right now it looks like we will get through this and come back out on the other side, right where we left off. Eating and drinking by mouth. Yes days like today it would have been nice to have the G-tube so that I didn't have to work as hard to get her to drink. But it's not about me. It's about teaching her to work through things like illnesses with her new "lifestyle" if you will. And truth be told, we've had little bouts of illness before the tube came out and it didn't phase her. Sadly this virus has been so much worse. For all of us - just when we thought we were on the mend...today it seemed to be back with a vengeance.
Regardless, we would most appreciate the prayers that we all continue to get well, and that Addison is back to eating and drinking regularly very soon.
This question has been on my mind through out this whole ordeal, but lets look at the big picture...
- Blake and Addison both got sick.
Granted Blake didn't ::knocks on wood:: get as sick as it seemed Addison did. (And I have my suspicions that her diarrhea was escalated by the fact that she has a Nissin Fundo in place and there for it could only come out one way, however without that it's possible it could have been shooting out both ends... still not ideal.) But Blake did not need IV hydration. (It did take a lot of syringes of liquids by mouth and a lot of wrestling though, but we did keep him drinking).
- Addison continued to drink, and even EAT through out this.
In fact, she drank so much the first day that it was hard to believe that she had gotten dehydrated she would not put her cup down. (Yes she too needed a few syringes full by mouth, especially after the initial bout of dehydration, but she was still doing what she needed to do). In fact, while it's not "a lot" or even "enough" for a normal day to day, she has had one and a half containers of purees today alone, plus ice chips and an apple slice or two. Pretty good for a sick kid, I mean come on how much do you want to eat when you aren't feeling well?
- Every medical professional who has seen her since she got sick with this mess has said the same thing... The G-tube would have essentially been the same as what she was drinking by mouth and wouldn't have prevented the dehydration when the end result is that the liquids just won't stay in. Sometimes it just happens and our bodies need the IV fluids to get over the hump.
- She is showing a great interest in wanting to eat more as the days progress.
In the end only time will tell, but right now it looks like we will get through this and come back out on the other side, right where we left off. Eating and drinking by mouth. Yes days like today it would have been nice to have the G-tube so that I didn't have to work as hard to get her to drink. But it's not about me. It's about teaching her to work through things like illnesses with her new "lifestyle" if you will. And truth be told, we've had little bouts of illness before the tube came out and it didn't phase her. Sadly this virus has been so much worse. For all of us - just when we thought we were on the mend...today it seemed to be back with a vengeance.
Regardless, we would most appreciate the prayers that we all continue to get well, and that Addison is back to eating and drinking regularly very soon.
Tuesday, February 19, 2013
Things I Learned About Sick Kids
This is exactly how Miss Addison feels about being sick. And yes that is a stethoscope around her neck. She is pretending to be Doc McStuffins |
So I am sure you've all missed us. And I promise things will be getting back to normal really soon. But for now, I have a few brief moments where the kiddos are asleep and I thought I'd share what I've learned throughout this experience.
For those who don't know, Friday we all started coming down with some kind of bug. The kids were cranky and extra clingy and I felt like I was barely alive. It was so bad I decided it was best to cancel the birthday festivities and by Saturday night I was in the ER with Miss Addison. Who then got admitted to the Ped's floor for 12 hours. Not how I wanted to spend my night, that is for sure. Long story short - she was wayyyyyyyyy dehydrated and her sodium levels were up and kidney function was down. She is fine now after several bags of fluids. Ok well "fine" is a relative term, she is hydrated and feeling a little better, but we are all still on the mend.
Sunday around the time we brought Addison home, Blake started getting sick. Let's just say just about every surface in the living room had been violated as well as the stairwell and the wall. And lets not forget the poor bathtub. Which meant I got to spend today sanitizing every surface now that it seems ::knocks on wood:: the worst is over. I am seriously hoping to have mostly normal babies tomorrow, but that might be too much to ask for.
However, all that being said. I have learned a lot through out this........
Just because your kid is drinking cup after cup after cup of liquid doesn't mean they aren't dehydrated. (Poor Addison just couldn't keep anything in.)
Even if she still had her G-tube, she still would have needed IV fluids. That one was a hard pill to swallow.
Nissin Fundo's can be a blessing and a curse. Try explaining to a crying 2 year old why she is dry heaving and cannot get anything to come up.
Gatorade is NOT a good idea for a toddler, especially when dehydrated. It can elevate sodium levels and actually make things worse. Pedialyte is a much better alternative.
Tummy virus + Hysterical Kid will likely equal a milk bath for mommy and not the relaxing kind... Even if it has been 24 hours since the last episode and you naively thought milk would be safe again.
I can fit four sofa cushion covers in the washer at once.
Hospitals are not any more fun with a 2 year old, and those chairs are still not comfy to sleep on.
I enjoy having them in our room more then I care to admit, probably more so because they actually mostly sleep thru the night even when they are sick. Compared to the newborn stage. I just like having them close.
I would give anything to trade places with them and keep them from getting sick like this, ever again.
And lastly I learned that the NICU has altered me in so many ways and still can effect me more then I sometimes admit. There I said it. I wish I didn't fear hospitals so much.
And now I leave you with an evening picture of my two sickies. They were starting to feel better and playing around a little tonight...
Friday, February 15, 2013
Feeding Tube Awareness 2013... Part 4
To conclude FTA Week -
What's it like to go out and about with a tubie?
http://ourvalentinesdaysurprise.blogspot.com/2012/02/feeding-tube-awareness-week-day-5.html
How do you travel with your tubie? What tips or tricks have you learned along the way?
I feel like back then I was still a "rookie" but it seemed to get easier as time went on. Like second nature.
To read all of our blog posts that are feeding tube related click here.
*** This will likely be the last you'll hear from me until next week. We've got a busy weekend ahead of us. Check in next week for Birthday Party details!
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Thursday, February 14, 2013
Letters to my Babies... 2 year old (Blake) Edition
My Precious Blake,
Do you know just how special you and Addison are? Two years ago you both shook our worlds upside down when you made your debut 14 weeks too soon. If you are anything like your Daddy most of this sappy stuff won't be important to you. But I am going to tell you anyway.
Each morning I hear you down the hall talking to Addison. I am pretty sure that most of the time you are in fact waking her up, as you whisper "Addi! Get up sissy." (Yes I can hear what you say to her.) From there I have tried to figure out the secret twin language that ensues but it's useless. I just don't understand. When I enter your room, I get the most innocent smile and a "Mornin' Momma!" Followed by a request to take your blankie with us downstairs.
When you were born we feared you wouldn't make it. You and Addison weren't supposed to be here yet. I didn't get to see you at 1:11 pm that day. Doctors and nurses took over and moved you to the NICU. But Daddy saw you, and told me just how perfect you were. I met you for the first time later that night. And Daddy was right, you were perfect. When I first saw you, your eyes were still fused shut. You tried so hard to open them whenever you heard our voices, and I remember daddy saying "Oh he'll open them, WHEN I GO BACK TO WORK." And you did. We still laugh about that. But the moment I locked eyes with you for the first time took my breath away. And then there was your first cry. It was like a cat's meow and we could barely hear it over the CPAP, but there is was. It made Daddy cry too! How precious you were (and still are).
We had a whole team of Miracle Workers who helped you survive and thrive.They taught mommy all she needed to know to bring you and Addison home. We visit these special people often and they are proud of how far you've come. One day I hope you'll thank them for what they did for you and Addi too. You were a rockstar from day one little man. And always into something, one of the nurses even named you Rascal, because of your antics.
You have always been a talker. Oh man do you have lots to say. And you are such a big helper too! You love to help me clean, bring me diapers and wipes and lots of other things. I think by far the best thing you do, is cheer on Addison when she is struggling with things. You make me and Daddy so very proud with all that you do. I love listening to you shout "Pirates" and cuddle with your Pirate man. From dancing the running man and stealing my heart. As long as you and Addison are around, there is a smile on Mommy's face.
Make sure that you keep looking out for Addison (even when she gets on your nerves). She'll be there for you always. And she loves you to the moon and back. (Really she does, even when she is tormenting you). Oh and don't worry, we know you love her too. Why? Because you love to tell her "Love Sissy".
Soon you'll be grown and married with children of your own. And I hope by then you understand how strong a parents love is. (And that you never forget your mommy, even though you may one day grow too big for cuddles). Daddy dreams that one day he'll coach little league football, and I just pray you don't get hurt.
Remember this... we love you little buddy. More then you can ever imagine. And if we had only known two years ago, where we'd be today. Well it would have saved us so much worry. Things we never thought we'd see happen, have and then some. Nothing short of a miracle around here.
Letter to My Babies... 2 year old (Addison) Edition
My Sweet Addison,
Over the last two years you have given me more joy then I could ever imagine (with just a few sides of heart ache and worry). And you know what, I wouldn't have it any other way. You have amazed all of us with your courage, strength, grace, and promise. You and Blake both have taught me what life is really about. You've taught me about miracles at their finest, and how delicate each breath is. Everyday I walk in to your room and see a bright smiling face and my heart melts at the sound of one word "MAMA!" (Which I can usually hear you calling from down the hall.)
The day you and Blake were born I knew my heart would forever walk outside of my body. You've learned the art of manipulation at a young age. Recently you have started to say "I love Mama" and "I love ya" but it's saved for special occasions... occasions when you've done something ornery and want to get out of trouble. You have also learned that a smile and one look will get you out of any trouble with Daddy and basically get you anything you want.
Two years ago we worried "Would you walk? Would you talk? Would you even survive?" You came into the world fighting at 1:10pm, and I remember a flash of blanket as they showed you to me and wheeled you away to the NICU. Later that night I got to see you again (which felt more like the first time), and they warned us that you may not make it. They asked if they should Baptize you then and we immediately said yes. I held hands with Daddy and your nurses and we prayed. I was only with you for a few brief moments when it was time for me to leave and get back to my room. See mommy was still on medicines and in pain from delivery. It was important that my medicines wore off before I could come see you again.
We left the NICU with a picture of you and your brother. That is what I looked at over and over the rest of the night until I was able to walk to get to you. The nurses warned me I should wait longer but it was important I see you. Before they would let us in, Dr. K needed to talk to us again. He warned us - said we had a very sick little girl on our hands. He also promised that he would do all that he could while we left the rest to God.
A lot of things have happened to you over the last two years. Most nothing short of a miracle. Addison you must know this... those people who were with you that first night, and those long 153 days later, made all the difference in your world. You won't understand this now, but I hope one day you will. See, for reasons we may never really know, my body just couldn't quiet do what it needed to, to keep you and Blake safe. (Secretly I think you and Blake both knew this and knew it was time to get out). Those doctors and nurses took care of you when I couldn't. They are all angels sent from Heaven, I am convinced. If it weren't for them, we wouldn't have you or Blake. You've visited these Miracle Workers several times since birth and each time they are amazed at just how special you are, and I cannot wait for the day when you can thank them personally for helping to give you life. They also taught me a great deal about how to care for two babies as precious as you and Blake.
As I sit here writing this, I reflect a little, and recall a time we wondered if you would ever walk and the many conversations we had with your therapists about it. But look at you know. You climb stairs (and anything else you can think of). And not only do you walk, you run, down the hallway to your toy room where I watch you talk to your baby doll and feed her just like Mommy feeds you. I listen to you and Blake talk to each other in that special twin language that only you two understand. You tell me things that usually make some sense. (And some of which is its own dose of sass already.) You point and shout "airplanes" when planes fly over head. You call "Sandi" for your favorite puppy dog, and who can forget "Minnie" your favorite stuffed lovey.
I also remember that night driving home from the hospital and your daddy turning up the radio and saying "This song, this is Addison's song. She's my firework." That song was Katy Perry's "Firework" - it took a long time for me to listen to that song without tears but it's true. It's totally you. I promise to play it for you often.
All of this though, is just the tip of the iceberg because Addison, you do just so much more then you can ever imagine. (Who can forget that just a few short months ago you were "feeding tube dependent" and now can out eat your brother.) Seriously, I just sat at the table with you tonight and watched you eat with a fork, off of a plate. And enjoyed every moment. And I am proud that you have learned that "all done" can only be used once you have ate enough (aka, you are eating more before you are "all done").
And speaking of your brother, there are a few things you should know about Blake. The first is that even on days where you bully him (yes, yes you do, and there is no denying that), he loves you and would go to the end of the world for you. Even in the NICU, sweet girl, he had to see what was going on with you all the time. The nurses commented often about how they would rotate him one way and he'd try so hard to turn back towards you. He has felt some of your pain. I watched him cry when things were happening to you. He will be your very best friend. He has rooted you on through countless feeding sessions and even cheered "Yay Addi". He is proud of all that you are. And there is no use denying it. We know you love him too. Promise to always be there for him, no matter what. He'll do the same for you.
All my life I've waited, wanted and prayed for children like you, how lucky am I to have not one but TWO! See that's just it. We are one of the lucky ones.
May you always know just how much we love you!
Wednesday, February 13, 2013
Feeding Tube Awareness 2013... Part 3
A recap of what a day in the life of a tubie mom is like...
http://ourvalentinesdaysurprise.blogspot.com/2012/02/feeding-tube-awareness-week-day-3.html
Are you the mom/dad of a tubie? What's a day like for you?
To read all of our blog posts that are feeding tube related click here.
Tuesday, February 12, 2013
Feeding Tube Awareness 2013 ... Part 2
For those who missed last year's FTA Week or are just joining our blog, over the next few days I will link back to some of the posts from last year, with lots of great information. You won't want to miss it!
I'll start with these:
http://ourvalentinesdaysurprise.blogspot.com/2012/02/feeding-tube-awareness-week-day-1.html - where I explain why Addison had a feeding tube.
http://ourvalentinesdaysurprise.blogspot.com/2012/02/feeding-tube-awareness-week-day-4.html - about changing perceptions about feeding tubes and the positive impacts of raising awareness
To read all of our blog posts that are feeding tube related click here.
Monday, February 11, 2013
Feeding Tube Awareness Week 2013.. Part 1
A feeding tube comes in quiet the variety and serve a large purpose.
Most preemies have a feeding for a period of time, sometimes longer then others. When born before 32 weeks, preemies lack the ability to suck, swallow and breath. It's usually not until between week 32 & 34 that a NICU would attempt bottle or breast feedings. Until then they supply nutrition via IV's and a feeding tube.
Some preemies have to come home on a feeding tube (like Addison) for various reasons. Addison had her's because of her Cleft Palate, severe reflux and the fact that she never learned to take a bottle because of both of those two things. Additionally our hospital will not do a Nissin (the procedure where they create a knot to help prevent reflux) without a G-tube.
Feeding tubes can be a long term life style change or a short term change. It depends on so many elements. Chances are you may know someone that has or has had a feeding tube. The best thing you can do is educate yourself about it. Ask questions (politely) to the parent of a tube fed child, DO NOT STARE, and please do not ask "WHAT'S WRONG WITH HER?" there is nothing "wrong", she just eats differently. And don't ask "When will he or she have that "thing" removed?" That "thing" will be there for as long as he/she needs it. I made up my mind early on that if it took forever and a day, that was ok too. Some people have no clue how long their child will need a feeding tube, actually most parents probably have know just how long it will take because each child is different.
You can also check out websites such as www.feedingtubeawareness.org and check them out on Facebook to learn more about feeding tubes and if you are a tubie or parent of a tubie - you can connect with others who are in your shoes. Flip through the blog posts labeled "Feeding Tube" to learn more about Addison's story.
Most of all, no matter what, be supportive. We are all thankful for the support we had and still have when it came to Addison (and Blake). Feeding Tube Awareness will always have a special place in my heart, and I will always acknowledge where Addison started at.
And lastly watch this video... http://www.youtube.com/watch?v=0jBX05Gs-RQ , from our friends at Feeding Tube Awareness on Facebook.
Check back all week long to read more blog post about our experience with a feeding tube!
Friday, February 8, 2013
Friday Date Night....
Last week's pick - "The Expendables 2" Starring Sylvester Sloan and Arnold Schwarzenegger. Best summary - war type movie. Guns, gore, not my style. A mans movie for sure. Not quiet "A-Team" which I actually liked.
This week's pick - "Wanderlust" Starring Jennifer Aniston and Paul Rudd. A married couple suddenly find themselves jobless and forced to move back in with the husband's brother who is a huge jerk. On the way to said brother's house they stay overnight at a "cult" homeland. When things get rough they return and attempt life with the cult of hippy types.
Jake has actually had the last two days off, so that's been nice for the most part. I went to the gym prior to "date night" we had dinner as a family and then cuddled up once the kids were in bed. And by cuddle up, I actually mean we each cuddle with our own blankets on separate couches lol.
Jake has actually had the last two days off, so that's been nice for the most part. I went to the gym prior to "date night" we had dinner as a family and then cuddled up once the kids were in bed. And by cuddle up, I actually mean we each cuddle with our own blankets on separate couches lol.
I am also currently taking suggestions for my next movie pick. So please chime in!
Thursday, February 7, 2013
Thankful Thursday
This Thursday I am thankful for the rare time when my hubby actually has a day off of work (let alone two) and we get to spend it together.
Thankful for good friends too, including Addison's Godfather and his family who we FINALLY had a chance to get together with. They are the sweetest people, and it was great catch up.
They also spoiled A&B with not just birthday presents but Christmas gifts..... AND they even got them cute little cupcakes so they could sing Happy Birthday to them since they will miss their party. (How thoughtful is that? So so sweet.) They are so thoughtful and it was nice to share that moment with them.
(Sorry J, I let Jake take the picture and of course he pretty much cuts you out. But atleast he got the cupcakes and the kiddos right? Smh.)
Thank you both for everything. <3
Thankful for good friends too, including Addison's Godfather and his family who we FINALLY had a chance to get together with. They are the sweetest people, and it was great catch up.
They also spoiled A&B with not just birthday presents but Christmas gifts..... AND they even got them cute little cupcakes so they could sing Happy Birthday to them since they will miss their party. (How thoughtful is that? So so sweet.) They are so thoughtful and it was nice to share that moment with them.
(Sorry J, I let Jake take the picture and of course he pretty much cuts you out. But atleast he got the cupcakes and the kiddos right? Smh.)
Thank you both for everything. <3
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Wednesday, February 6, 2013
What's in a Name?
Ever wonder how people come up with such creative titles for their blogs?
You think they must have spent hours on end trying to decide on a great title that would stand out right? Or perhaps they have an old stage name or nickname that just fits?
For me it was simple. Our Valentine's Day Surprise. A & B were born on Valentine's Day, we were surprised when contractions started and my OB said "Your babies will be here by lunch time," and told the nurse to book the OR. We had hoped and prayed that my body would hold out for sooo much longer.
It's actually sometimes funny because people that don't know us or know our story will ask if by "surprise" we meant "surprise it's twins"... But nope, we knew from early on it was twins, and only one of us was really surprised by that ::coughs:: Jake ::coughs:: lol.
So that blog readers is how we got our name.
Tell me, if you blog too (or were to start a blog), how did you (would you) come up with a name?
You think they must have spent hours on end trying to decide on a great title that would stand out right? Or perhaps they have an old stage name or nickname that just fits?
For me it was simple. Our Valentine's Day Surprise. A & B were born on Valentine's Day, we were surprised when contractions started and my OB said "Your babies will be here by lunch time," and told the nurse to book the OR. We had hoped and prayed that my body would hold out for sooo much longer.
It's actually sometimes funny because people that don't know us or know our story will ask if by "surprise" we meant "surprise it's twins"... But nope, we knew from early on it was twins, and only one of us was really surprised by that ::coughs:: Jake ::coughs:: lol.
So that blog readers is how we got our name.
Tell me, if you blog too (or were to start a blog), how did you (would you) come up with a name?
Tuesday, February 5, 2013
With Love - From Philly
Hello there. My name is Stephanie and I’m from Urbanflowerpot.Blogspot.com . I’m also from Philadelphia and a preemie mom.
I met Melissa nearly two years ago. We had similar due dates in May but we both had our babies early and met on a message board. Her stay was a lot more complicated than ours so I wrote to her in case she wanted to talk more; I don’t think a day has gone by since when we haven’t spoken. She is one of my dearest friends.
I’d like to share something special with all of you for my first guest blog appearance here on Our Valentine’s Day Surprise: it is a mural that, to me, is the heart of Philadelphia (other than the LOVE sculpture, naturally). It is actually one of 50 murals known as The Love Letter Project. They were done by a local artist named Steve Powers as his way to show love to a part of the city that is generally considered an eyesore.
This one is my favorite because of its sentiment.
Love Letter to Philadelphia - and my premature son in NICU |
People who saw it thought I’d made it in Photoshop. It fit that well. If you were here I’d be home now…
Preemie mothers (and fathers) long to hold their babies without cords, without fear. My biggest dream was to lay with him on our bed at home. Just lay there and gaze at my baby. Home.
Last summer I returned to the “Home Now” mural – with Tristan in my arms. It is across from another mural in the series that says “Hold Tight.” I did.
Through blogging and sharing our story I hope to raise prematurity awareness. Our adventures through toddlerhood can be found at UrbanFlowerpot.Blogspot.com – and I look forward to sharing more stories with you in the future.
Monday, February 4, 2013
Mommy & Me Monday
I love cuddles with my babies. |
Go Ravens! - Watching the Superbowl and Addison sporting her Ravens tutu made by yours truly! |
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Saturday, February 2, 2013
Unsung Heroes
I cannot take all the credit for Addison's accomplishments. The fact is, there was an entire village of people who helped us achieve this. Those people are the unsung heroes.
Her OT (and PT) who worked with her very diligently for a year and a half, who taught me the skills and tricks I needed to help her eat (walk, talk, etc). What to watch for and how to calm her when she was unsure and would panic. They were the team that I pinged ideas off of and took the most suggestions from. It literally broke my heart in two when we decided to move, knowing I'd leave behind two people who played a major role in Addison's success. I still email both her OT & PT from our old "home" often and update them on Addison's progress. Her new OT here is pretty awesome too!
Our Ped, who lets face it, can be blunt and focused. He is the one who gave me my back bone when we brought Blake home from the NICU and faced challenged with Addison's NICU care. He is also the one who finally said "Enough is enough, she can eat, she needs to eat," and got us to take that leap of faith back in October. If not for him, we might not be where we are now. Jake and I both value our Ped so much that we are willing to make the drive back to MD just to remain in his care. It's not always convenient and I miss being 5 minutes from his office, but it's worth it.
Last but certainly not least, our family and friends who prayed for us, cheered for us and picked me up when I felt like I hit rock bottom. Always pushing us forward and giving me the faith to press on. One of my dearest friends has probably learned more about G-Tubes then she ever needed to know, was one of my biggest supporters throughout this process and probably one of the very few - who understood even though she wasn't expeirencing these situations first hand. I called her when I was breaking down, and thought we were making the wrong call, shouldn't I just go back to tube feeding her, all of that crazy stuff that you think of in the thick of things.
In fact I remember calling her one day when Addison was being particularly trying with me and admitting (shamefully) my frustrations and how I just in that moment wished I wasn't the only one who "could" feed her. (Bare in mind at the time OT had suggested against letting anyone else feed her until Addison was more confident or the person had time to observe and learn her behavior. Plus with Jake's busy schedule I usually am the only one around when it's meal time.) I just needed a break and was at my wits end, but giving up would = failure for Addison. "S" an EBFer (exclusive breastfeeder) said to me then "Think of it this way, it's sort of like BFing. You are the only one who can do it. You spend hours everyday nurturing and providing nutrition. There are times when it is so frustrating (she was speaking from her own experience here with trying to correct confusion in her son and transition him to EBFing) but you just keep going. In the end its a bond that only the two of you will share, something you will look back on and realize how far you have come. Something no one else will have with her."
This hit home for me on many levels... One because "S" was right. This was a journey that Addison and I would share together and accomplish so many things. A bond that only her and I had formed, and would look back on together. And the other, because I longed to BF - planned on it - and then it didn't work out. I mourned that missed opportunity. Until that moment. This was so similar in so many ways. Not the same, but similar. I cannot tell you how many times I played that conversation in my head, over and over. To remind myself that that I was committed. I wanted this for her, for us. It helped to surround myself with people who believed in all of it. Believed in us. And people who respected the transition we were making and how diligent and careful we had to proceed.
The grandparents and friends who cried tears of joy when I sent pictures of our "first" Thanksgiving where Addison chewed on a turkey leg and ate sweet potatoes and pumpkin pie. The great friends who offered suggestions on what food contained high calories or how to increase calories. Or just listened to me whine when things were tough. And cheered when things were going great. Those who know what a miracle this all is.
It's because of each and every one of you reading this right now. I hope that you all will share our joy and recognize the role you each played in our success. Thank you from the bottom of our hearts.
Like us on Facebook for up to the minute news and happenings.... www.facebook.com/OurValentinesDaySurprise
Her OT (and PT) who worked with her very diligently for a year and a half, who taught me the skills and tricks I needed to help her eat (walk, talk, etc). What to watch for and how to calm her when she was unsure and would panic. They were the team that I pinged ideas off of and took the most suggestions from. It literally broke my heart in two when we decided to move, knowing I'd leave behind two people who played a major role in Addison's success. I still email both her OT & PT from our old "home" often and update them on Addison's progress. Her new OT here is pretty awesome too!
Our Ped, who lets face it, can be blunt and focused. He is the one who gave me my back bone when we brought Blake home from the NICU and faced challenged with Addison's NICU care. He is also the one who finally said "Enough is enough, she can eat, she needs to eat," and got us to take that leap of faith back in October. If not for him, we might not be where we are now. Jake and I both value our Ped so much that we are willing to make the drive back to MD just to remain in his care. It's not always convenient and I miss being 5 minutes from his office, but it's worth it.
Last but certainly not least, our family and friends who prayed for us, cheered for us and picked me up when I felt like I hit rock bottom. Always pushing us forward and giving me the faith to press on. One of my dearest friends has probably learned more about G-Tubes then she ever needed to know, was one of my biggest supporters throughout this process and probably one of the very few - who understood even though she wasn't expeirencing these situations first hand. I called her when I was breaking down, and thought we were making the wrong call, shouldn't I just go back to tube feeding her, all of that crazy stuff that you think of in the thick of things.
In fact I remember calling her one day when Addison was being particularly trying with me and admitting (shamefully) my frustrations and how I just in that moment wished I wasn't the only one who "could" feed her. (Bare in mind at the time OT had suggested against letting anyone else feed her until Addison was more confident or the person had time to observe and learn her behavior. Plus with Jake's busy schedule I usually am the only one around when it's meal time.) I just needed a break and was at my wits end, but giving up would = failure for Addison. "S" an EBFer (exclusive breastfeeder) said to me then "Think of it this way, it's sort of like BFing. You are the only one who can do it. You spend hours everyday nurturing and providing nutrition. There are times when it is so frustrating (she was speaking from her own experience here with trying to correct confusion in her son and transition him to EBFing) but you just keep going. In the end its a bond that only the two of you will share, something you will look back on and realize how far you have come. Something no one else will have with her."
This hit home for me on many levels... One because "S" was right. This was a journey that Addison and I would share together and accomplish so many things. A bond that only her and I had formed, and would look back on together. And the other, because I longed to BF - planned on it - and then it didn't work out. I mourned that missed opportunity. Until that moment. This was so similar in so many ways. Not the same, but similar. I cannot tell you how many times I played that conversation in my head, over and over. To remind myself that that I was committed. I wanted this for her, for us. It helped to surround myself with people who believed in all of it. Believed in us. And people who respected the transition we were making and how diligent and careful we had to proceed.
The grandparents and friends who cried tears of joy when I sent pictures of our "first" Thanksgiving where Addison chewed on a turkey leg and ate sweet potatoes and pumpkin pie. The great friends who offered suggestions on what food contained high calories or how to increase calories. Or just listened to me whine when things were tough. And cheered when things were going great. Those who know what a miracle this all is.
It's because of each and every one of you reading this right now. I hope that you all will share our joy and recognize the role you each played in our success. Thank you from the bottom of our hearts.
Like us on Facebook for up to the minute news and happenings.... www.facebook.com/OurValentinesDaySurprise
Friday, February 1, 2013
Friday Night Date Night
Dinner was a double date for food court Chinese at the mall and then we walked around with the kiddos for a bit to let them burn off some energy. We walked in one of the kids clothing stores (the name escapes me now) and Addison chose to pick some shoes (ok half a display) off the rack and throw a fit, then run when Jake told her no. It was funny, mostly because it wasn't happening to me and he got a taste of what it's like for me ALONE lol.
We've got Jake for the whole weekend PLUS a visit from Grammy and Pop-Pop too. Addison and Blake are super excited! Oh and how can I forget... the new church we've been attending, the Bishop is coming this week. HUGE. I for one am excited. This is super cool.
Now without further waiting - The movies...
Last week's movie - "The Words" Starring Bradley Cooper and Zoe Saldana. Eh. I was expecting so much more from this movie and was a little disappointing It was one of those movies that flash back and forth between the past & present and I had a hard time keeping up. Bradley Cooper's character basically plagerizes another person's work and a novel is then written about it. The person who was the original writer comes out of the woodwork and confronts him. On a scale of 1-5 I say it's a 2.
This week's movie - "The Expendables 2" Jake's pick. Starring Sylvester Sloan and Arnold Schwarzenegger. About a group who is set to carry out a simple mission and fight back against an evil villain who threatens the world with a massive weapon. Typically not my type of movie but I'll let you know what I think come next week. I am just currently glad he didn't take me out to the movies to see this one ;)
--- Also --- Don't for get to tune in next week for a special guest blogger with our newest feature "With Love - From Philly!" You won't want to miss it.
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We've got Jake for the whole weekend PLUS a visit from Grammy and Pop-Pop too. Addison and Blake are super excited! Oh and how can I forget... the new church we've been attending, the Bishop is coming this week. HUGE. I for one am excited. This is super cool.
Now without further waiting - The movies...
Last week's movie - "The Words" Starring Bradley Cooper and Zoe Saldana. Eh. I was expecting so much more from this movie and was a little disappointing It was one of those movies that flash back and forth between the past & present and I had a hard time keeping up. Bradley Cooper's character basically plagerizes another person's work and a novel is then written about it. The person who was the original writer comes out of the woodwork and confronts him. On a scale of 1-5 I say it's a 2.
This week's movie - "The Expendables 2" Jake's pick. Starring Sylvester Sloan and Arnold Schwarzenegger. About a group who is set to carry out a simple mission and fight back against an evil villain who threatens the world with a massive weapon. Typically not my type of movie but I'll let you know what I think come next week. I am just currently glad he didn't take me out to the movies to see this one ;)
--- Also --- Don't for get to tune in next week for a special guest blogger with our newest feature "With Love - From Philly!" You won't want to miss it.
Like us on Facebook!
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