A Reflection on the past 23 days...
So, it's been a whole week since I posted! Why haven't all our loyal blog readers started wondering where I went?!?! 
My first thought? Many of you are parents and KNOW what a crazy life
you instantly have when you bring a child into this world and then you
think.. "Sheesh! How do you bury one and have on in the NICU on top of
that life changing experience?" Enough said I guess...
So, I want to give you some brief updates on Addy. I'll do that at the end of the post with MORE pictures! I want to end this post on a happy note and she certainly makes my troubles disappear at times...
So, I'll begin with a reflection, as the post states...
23 days after the birth of our daughters and 23 days after the death of Reagan. How are we doing? Many say there are stages of grieving that you go through, and there is. I have been asked at least twice this week if I have gotten past the "denial" phase of grieving and come to realize that Reagan wasn't coming home. As if I were numb to this situation we've been through. So, I've thought about it, and I'm not sure I ever went through denial. Our situation is so entirely different than most. Reagan's lethal diagnosis was given at 15 weeks and we cried for 15 weeks with the ups and downs....we fought and got defeated so many times I wondered how we would keep putting one foot in front of the other. We came to a point where we had done everything we could and at that point, I realized I had to find a way to accept what was to come. I held onto hope for Reagan, every ounce I could find. Any little thing I discovered, I questioned the doctors. I theorized possibilities of what could be done in utero and what could be done once she was born. We fathomed delivering at Vanderbilt to give her an excellent choice..we did as much as we possibly could, yet tried to prepare for her death at the same time. So, I'm not sure where my denial phase was grieved at, but I assume it was around the time of her fetal surgery (20 weeks). And, then I think I hit the acceptance stage at 21 weeks when we discovered her shunt fell out and the doctor said.. "She's not going to make it" and I replied, "I don't think it's up to ANY of us now." I knew it was no longer in our hands and I put it in God's hands. I knew we had no other choice. So, I'm not sure where my grieving stage is. But I know my daughter is gone, but I also know my heart weighs heavy from her loss, yet joyful that we were so blessed to have Addy as well...
So, why is "Mrs. Positive" so blue this week? If you have had a child in the NICU, or a child who was so sick that they were hospitalized for several weeks, you might understand the helpless feeling you have. You try to do EVERYTHING the nurses let you. You smile and stay positive, you go sleepless nights, you cry when you miss a special moment (like having them moved into a different incubator), you get nervous when they do something you don't think they are supposed to do, you miss them terribly and realize at the end of the night you must go home and they must stay yet another day.... You do this because you are a parent and you will set aside every waking moment and breathe just to make sure they have the best possible care and they know they are loved and that you are their parent and not the nurses. Granted, I cannot complain about any of the NICU nurses. They have been PHENOMENAL! Every once in a while, we get a new nurse and we have to get acquainted (and that takes time), but other then that we couldn't ask for better babysitters for our daughter. The charge nurse, one of our fave nurses, actually came in the other night and REQUESTED Addy as one of her patients. I just wanted to cry. I knew someone else was giving Addy the best possible love and care she could and that even though I couldn't be there 24/7, I knew Addy knew she was loved. It was just a reassuring feeling...
So, with that said, events in the NICU have been tough, and each level of the NICU seems to have it's own "feeling." Back in Level III, we cried when we saw parents lose their children. We knew that pain and it was fresh in our minds. All we could do was stare at Addy and just let tears roll down our faces...knowing WE were the lucky ones. Why? Because WE had Addy too. So, even though we lost Reagan, we still have a piece of hope to hold onto, unlike the families who lost their one and only child. Now, in Level II, a different feeling. One night, we saw a young (maybe 17) girl in there. Her little girl was in an open warmer bed (this is a step below the incubators). One of the first rules of the NICU is you don't do anything with your child unless the nurse tells you to do it. These babies all have monitors and most have IVs, feeding tubes, and some form of oxygen supply. It is NOT easy to pick these little babies up. This young mother just picked up her child out of the warmer bed and started holding her without asking and the baby started screaming. The nurse had to stop what she was doing with another baby and take care of the situation. Then, upon their conversation (which we were honestly trying to ignore!), we discovered she was young, either just graduated or still in school, the "daddy" just went to go by the car seat that day, the mother did not know what a 5 point harness on a car seat was, she talked really loud to her baby (babies in the NICU can't handle that kind of stimulation), and the list goes on... And, we sit there. Me holding Addy and Charley just shaking his head...wondering why us? This mother most likely has no insurance, and we are paying the bill for her and her baby in the NICU (FYI, NICU bills are around $2500/day..yes PER DAY PER CHILD not including special medications or admission). Here we are grown adults with good jobs, a nice home, and a good marriage and we could not only NOT conceive on our own, but we had to bury our daughter 2 weeks ago and also have our other daughter in the NICU, yet this young mother is sitting there having no clue what is going on and playing with her daughter (who is obviously a preemie) like she's a puppet. Needless to say, this baby moved into an incubator faster than any baby we've seen move into an incubator. This way the mother couldn't oversimulate her...by the next day, she was also moved to Level I.
Another story of the NICU. This one not really appalling, just painful on my heart. I got to feed Addy her first bottle on Thursday. It was a wonderful experience. On her 2nd bottle, I was informed that they were going to get 2 admissions very soon, a set of twins. They let me stay and bottle feed Addy for her time limit of 30 minutes and then let me tube feed her the rest by hand (about another 20 minutes). Well, things started hopping and they didn't mind me staying there. They even let me stay during shift change, something you aren't supposed to do, but sometimes this one slides when you are there for feedings and you've been in the NICU long enough AND you've had a situation like we've had. Well, our fave nurse told me it would probably be best to put Addy back as the babies were coming soon and to give them about an hour. I understood. That did not bother me the least bit because I knew parents were probably asked to step out for our daughters admissions. It's the least we could do in return for the favors granted to us up front. What I wasn't able to handle was returning to the NICU and seeing TWINS... seeing the one thing we were supposed to have, but don't. Two living, breathing beautiful babies. That was hard. Not that it was anyones fault, as it wasn't, but my heart just felt heavy and again wondered why?
Deep down, I know bits and pieces of the why? I'll never truly know WHY this all happened to us, but I know I will forever feel blessed to have Addy with us. I know we are the lucky ones when I see other parents lose their one and only child. I know Addy will be extra loved and extra spoiled by SO many people, even complete strangers, because they know her story....and deep down they feel that loss just a little bit too and the way to help sometimes fill that void is to remind yourself how extra special Addy is because of all she had been through. There is something truly special about having an angel for a sister, a daughter, a granddaughter, a niece... We know that if Reagan didn't have the problem she did, Addy wouldn't have done as well as she has (Babies under stress in the womb mature faster - Addy certainly did..). We know a lot of whys, but not the main "why" which we may never know... Yet, we are so forever thankful for this situation..
Many have NO idea what to say to us. And, that's okay. We often get the basic "My condolences on Reagan and my congratulations on Addison." What else is there to say? It is the unfortunate truth of the situation. We might get upset from time to time from hearing this, but NEVER take it personal. We will NEVER get angry with you for not understanding our situation. This is one situation where you must walk in the shoes to know what to say. We just hold you never have to live this pain. Sometimes, we don't know what to say to you. A few of the hardest things in our lives right now are 1) making sure people know we have TWO daughters and 2) explaining to strangers that we just had twins and lost one without leaving a heavy burden on them. This situation wasn't the fault of anyone... not me, not Charley, not Addy, not Reagn, not the doctors, not the nurses... not anyone... And, we just cannot figure out a generic answer to some of the questions people ask us. In time, our hearts will start to heal enough to allow those conversations to not be so difficult. So, please don't feel awful about saying things to us. The worst thing you can do to us is to forget Reagan, as she will never be forgotten to us...
Even at my deepest, darkest moments in the walk through grieving a child and celebrating another one at the same time, I know how truly blessed we are. How truly lucky we are.. You may wonder why. It's because of people like YOU. It's the crazy things like receiving baby congratulation cards, gifts, and sympathy cards on the same day. It's the amazing little miracles that have come from this beautiful 23 days. In 23 days, we have discovered our true friends. We have lived more in 23 days then we may ever live in our entire lifetime. We have celebrated, grieved, loved, and leaned on so many for support. And, so many of you have been there, standing behind us to hold us up when we fall. And, that is why we are so blessed. We have so many that have reached out to us in so many ways. We want EVERYONE to know we appreciate the support and although we may not ask for those gracious offers right this moment, please know we hold those offers dear to our hearts and although we may not need them RIGHT now, but we might later... and we will need all of you as we continue forward.
Just a FEW examples of the amazing support we've received. Many of you know we have volunteered for youth bowling for many years now (Me mainly, but I got Charley slowly involved over the years). Our state Jamboree (big meeting for the year), was this past weekend. We wanted to go badly, but it wasn't feasible. Charley was just flat exhausted. I couldn't leave Addy and I just had major surgery. So, with a heavy heart, we stayed because we knew we needed to. Just yesterday, the most amazing thing came in my mailbox. A check for $315.00 from the state board. We were shocked. I have read the letter probably 10 times now. This check came from the halfpot they do during dinner at the banquet. This money has ALWAYS and I mean ALWAYS gone straight back to the kid's scholarship money. Never have I seen it given out in my life. And the split of the pot was $315.00 and it was given to Reagan. It's to help us remember Reagan in whatever way we need to, and we will do that to it's utmost value and then some.. How beautiful is that? We are so very grateful for this and for the many stories like this.. A few other beautiful moments are my Great Aunt Cookie making an "extra" blanket just for Reagan. We had buried her with the blanket she gave us for our baby shower. That was Reagan's blanket and Aunt Cookie remade a 2nd one so we will have it to cherish. My Aunt Sandy did the same. We buried Reagan with her bracelet and Aunt Sandy made us a 2nd bracelet. Or the amazing cards we have received. Some with amazing donations to help us remember Reagan and to help us always remind Addy that she had a twin sister. We have an assortment of beautiful angels. And, we plan to put shelves in Addy's room and decorate her room with some beautiful momentos. We plan to release lavendar balloons on Reagan & Addy's birthday every year to celebrate her little life. And, with the gracious donations we've received, we plan to give Reagan a beautiful headstone that anyone can visit and be reminded about how precious life is and how much of an impact that a little girl that lived 1 hour and 27 minutes had on so many. I'll never forget the line of cars that followed us to the cemetery or the amount of people that paraded by her casket. Who would of known our daughter could of touched so many lives? Again, a blessing... a beautiful moment...
In just 23 days, our lives have been changed forever, not only by our daughter's brief, yet amazing 1 hour and 27 minutes or by our other daughter's amazing 23 days in the NICU where she has jumped leaps and bounds, but by our friends and family and the strangers that have become friends and family... For that, we are forever blessed and grateful.
I will continue to pour my heart into this blog with the good and the bad. It is almost a "healing" process for me. And, all the wonderful comments made to this blog are healing too.
A few more things before I move onto Addy.
1) We received a beautiful letter and bracelet today from a family member. She has submitted Reagan's name to the 2007 National Share Walk (ironically, I had just read this information a few days ago when I requested a grievance packet from the SHARE organization). It's sort of like the Race for the Cure, but it's called the National SHARE walk (Share is for pregnancy and infant loss support - there is one at St. Mary's, where we delivered). They have smaller walks throughout the country, but the main walk is in St. Louis. She submitted Reagan's name and she is an "Angel in the Crowd." Tera, my sister-in-law, had said to me that she wanted to do something in remembrance of Reagan each year as a family..something like a walk. Ironically, I think I found this walk at Deaconess hospital. I'll have to find more info on it, but for now..this is what I know: (BTW, thank you dearly Marcia...what a beautiful surprise you left in my mailbox today...I cried with joy and sadness all rolled into one).
SHARE Website
Click Here to get information on how to Register to be an Angel in the Crowd for Reagan Burge (Deadline: August 28th)
This is just preliminary Info..I'll try and post more later. By sponsoring and being an Angel in the Crowd for Reagan Dawn Burge, you are helping raise money for support to bereaved parents. It's an amazing journey for us that has only begun and we know SHARE will be there to help us through...
2) In conjunction with the share walk, you'll notice October is Infant and Pregnancy Awareness Month. I hope I can come up with something special to do for Reagan then, but I did discover that it seems Deaconess Hospital does a "Walk to Remember" for this month. I'm not sure if it's part of the SHARE walk or not, but I need to see if it is set up like teams or not... Time has not been on my side lately... Here's the link for that:
Walk to Remember at Deaconess
OKAY! Now, onto the good stuff.. Little Miss Addison!!!
Some brief info:
Saturday 8/18/07
3lb 5.1oz - 28ccs of formula every 3 hours by tube
She got moved into a regular incubator! (Not the higher tec ones - They change incubators every 14 days to decrease risk of infections). She also got moved to Level II care this day too!!
PLEASE! No Papparazi!
Ahhh...just chillin' in my isolette! Can you see I've already begun my modeling career?
Sunday 8/19/07
3lbs 5.6oz - 28ccs of formula every 3 hours by tube
Addy: Meet your new incubator/Incubator: Meet your new roommate!
Monday 8/20/07
3lbz 7.4oz - 30ccs of formula every 3 hours by tube - THAT'S A FULL OUNCE!!!
She was measured today and was 41cm long (or 16 1/4inches), so somewhere..she shrunk! She WAS 16 3/4inches, but based on how they have to measure babies I can imagine that there is some inaccuracy here! Looks like she's still just a measily 16 1/4 inches long though...no growth there!
Just for some fun size comparison! Yes, even at 3 1/2lbs...we are tiny, but beginning to fill into our own skin!
See my little bracelet that my Great Aunt Sandy made me? It's still so big it just slides right off my hand!
Tuesday 8/21/07 - HAPPY BIRTHDAY AUNT TERA!!!
3lb 10.1 oz - 30ccs of formula every 3 hours by tube
Addy ROOTED for food today! She was looking for it because the nurse was about 15 minutes late on her feeding (nothing new.. happens all the time) and she let out a yelp because she knows that she gets HUNGRY now!
Just wishing my Aunt Tera a VERY Happy Birthday!
Supportin' Mom & Dad's Alumni! GO EAGLES! (The USI Alumni association sent one for Addy & one for Reagan).
Ya, it's WAY too big, but I'll EVENTUALLY grow into it! Maybe sometime next fall?
Wednesday 8/22/07
3lbs 10.2oz - 30ccs of formula every 3 hours by tube
We found out today we would get to start bottles on Thursday! Oh, and when we went to visit at night, miss Addy decided to explode her diaper with poop! The nurse handed her to me and the SECOND my hand hit her tiny butt she just let it rip...so we get a diaper (several minutes later mind you), and go to change her and 3 diapers and a 1/2 a bag of wipes later she decides she's done pooping! No lie..the nurse and my mom and I were just laughing hysterically. People came from across the room to see her exploding. We got "some" pics of this little event but most are blurry..but here's an after photo of her..she looks like she feels MUCH better...
I'm goin' grow up to be THIS big!
Thursday 8/23/07 - HAPPY 3 WEEK BIRTHDAY ADDY!
3lb 10.7oz - 30 ccs every 3 hours - FIRST EVER BOTTLE!!!
With the start of bottles, she gets a 30 minute time limit. Whatever she doesn't eat in 30 minutes, she gets the rest through her tube. Plus, they are trying to shorten her tube feeding times from 1 hour infusions to 30 minute infusions. This takes a little time. Every baby knows how to suck, swallow, and breathe, but doing these together takes a LOT of effort and most babies cannot do this until they are 34 to 36 weeks gestation. Addy has started to coordinate this effort at just 32 weeks and 2 days gestation! (Or, that's what she would of been had she been inside my belly still). Plus, this is just 2-3 times on the bottle per day. She gets breaks inbetween bottles. Trying to coordinate this effort causes stress to her and she could start to lose a little weight or not gain as quickly. It just really depends...
9am feed - Bottle - She took 10ccs - GREAT JOB!
6pm feed - Bottle - She took 8ccs
3am feed - Bottle - Her nurse Rachel recorded she took an entire 30ccs of formula!! (ONE full ounce!)
FINALLY! Mommy stuck me in some sleepers that were mine! Don't I look cute?
Friday 8/24/07
3lb 12.7oz - 30-35ccs every 3 hours
12pm feed - Bottle - She took 7ccs (I was all geared up that she might take more, but the nurse reassured me that sometimes they have a "honeymoon" period and take a bunch and then slack off.. So, we tried slow flow and standard flow nipples quite a bit to see if she could handle the standard flow to get more milk out with less effort..
6pm feed - Bottle - 10 ccs
3am feed - Bottle - 10 ccs
LOOK AT ME!! Suck, Swallow, Breathe!! (And yes, those fingers of mom's are stragetically placed to aide in this bottling effort. A finger under the chin to get her jaws moving when she slows, a finger to keep her cannula in, a finger on the bottle, and the other 2 fingers are free to stimulate her cheaks and get her going there too!)
And, just because I'm so cute! Now I've got the purple outfit, purple pacifier, and we just need a purple blanket and if we could get a purple oxygen tube..we'd be in business!
Saturday 8/25/07 - ANOTHER BIG BIG DAY!!!
3lb 13.6oz - 30-35ccs every 3 hours
Well, we had a VERY NICE surprise this evening... Addy doesn't have her cannula (the tube into her nose that pushes a low flow of oxygen to help remind her to breathe) anymore!! I was SO not prepared for this one! She now has a Oxyhood that sits over her face and helps with her breathing in her isolette, but only when she needs it and her oxygen levels fall below 88. She does have to have her cannula in when she gets bottles though, so it's not completely gone. And, we've been cautiously reminded that the cannula will likely come back at some point, but this is the process of weaning...
12pm feed - Bottle - She took 17ccs!! WOOHOO! This is the most I've gotten her to take. She did really well... Feeding a Preemie is hard work, but the nurses give me tips left and right and I'm SLOWLY trying to figure this one out. I've fed numerous babies in my lifetime, but it is COMPLETELY different than feeding a preemie!
6pm feed - Bottle - She took ALL 30ccs!!!!! YAHOO!! I couldn't believe it! The nurses there have reassured me left and right that they feed these babies all the time, so don't worry if we can't get her to take as much. We're learning right alongside Addy. But, we were extremely to hear she is taking bottles so well. That's a tough task.
See my Oxyhood? It just sits over my face when I need it. No more cannula for now either! (only when I bottle feed) And, see the stickers daddy snuck into my isolette when mommy wasn't looking? Looks like I'm going to be a UK and Cubs fan. Daddy thinks I'll just sit and watch sports with him, boy does he not know what I'm about just yet!
Here is Addy's oxygen machine by her bedside. The top cream colored monitor tells the exact oxygen percentage (Room air is 21%, Addy breathe typically room aire and this cannula just pushed a low flow to the back of her throat to remind her to breathe. She occasioanlly needs extra oxygen, like during bathes, getting bottlefed, etc..any type of stimulation typically warrants an increase in O2.
This is the cardiac monitor and the oxygen saturation monitor. The cardiac monitor monitors her respiratory rates and her heart rate. When Addy has a Brady, her heartbeat literally goes from 150+bpm down to 50bpm. Not abnormal for preemies, but this machine helps catch this and monitors the babies. The Oxygen sat monitor measures how much oxygen you are truly getting.
LOOK!!! NO CANNULA!! See them FULL cheeks! We're GROWING!!!!
And, I've learned how to do video on the digital camera AND learned how to post it to YouTube (what a GREAT little invention!)...so I'm going to start sharing a little video of Addy..
This was on August 10th when she was just 8 days old...it's her sucking her pacifier.
Addy sucks her pacifier
My first thought? Many of you are parents and KNOW what a crazy life
you instantly have when you bring a child into this world and then you
think.. "Sheesh! How do you bury one and have on in the NICU on top of
that life changing experience?" Enough said I guess...So, I want to give you some brief updates on Addy. I'll do that at the end of the post with MORE pictures! I want to end this post on a happy note and she certainly makes my troubles disappear at times...
So, I'll begin with a reflection, as the post states...
23 days after the birth of our daughters and 23 days after the death of Reagan. How are we doing? Many say there are stages of grieving that you go through, and there is. I have been asked at least twice this week if I have gotten past the "denial" phase of grieving and come to realize that Reagan wasn't coming home. As if I were numb to this situation we've been through. So, I've thought about it, and I'm not sure I ever went through denial. Our situation is so entirely different than most. Reagan's lethal diagnosis was given at 15 weeks and we cried for 15 weeks with the ups and downs....we fought and got defeated so many times I wondered how we would keep putting one foot in front of the other. We came to a point where we had done everything we could and at that point, I realized I had to find a way to accept what was to come. I held onto hope for Reagan, every ounce I could find. Any little thing I discovered, I questioned the doctors. I theorized possibilities of what could be done in utero and what could be done once she was born. We fathomed delivering at Vanderbilt to give her an excellent choice..we did as much as we possibly could, yet tried to prepare for her death at the same time. So, I'm not sure where my denial phase was grieved at, but I assume it was around the time of her fetal surgery (20 weeks). And, then I think I hit the acceptance stage at 21 weeks when we discovered her shunt fell out and the doctor said.. "She's not going to make it" and I replied, "I don't think it's up to ANY of us now." I knew it was no longer in our hands and I put it in God's hands. I knew we had no other choice. So, I'm not sure where my grieving stage is. But I know my daughter is gone, but I also know my heart weighs heavy from her loss, yet joyful that we were so blessed to have Addy as well...
So, why is "Mrs. Positive" so blue this week? If you have had a child in the NICU, or a child who was so sick that they were hospitalized for several weeks, you might understand the helpless feeling you have. You try to do EVERYTHING the nurses let you. You smile and stay positive, you go sleepless nights, you cry when you miss a special moment (like having them moved into a different incubator), you get nervous when they do something you don't think they are supposed to do, you miss them terribly and realize at the end of the night you must go home and they must stay yet another day.... You do this because you are a parent and you will set aside every waking moment and breathe just to make sure they have the best possible care and they know they are loved and that you are their parent and not the nurses. Granted, I cannot complain about any of the NICU nurses. They have been PHENOMENAL! Every once in a while, we get a new nurse and we have to get acquainted (and that takes time), but other then that we couldn't ask for better babysitters for our daughter. The charge nurse, one of our fave nurses, actually came in the other night and REQUESTED Addy as one of her patients. I just wanted to cry. I knew someone else was giving Addy the best possible love and care she could and that even though I couldn't be there 24/7, I knew Addy knew she was loved. It was just a reassuring feeling...
So, with that said, events in the NICU have been tough, and each level of the NICU seems to have it's own "feeling." Back in Level III, we cried when we saw parents lose their children. We knew that pain and it was fresh in our minds. All we could do was stare at Addy and just let tears roll down our faces...knowing WE were the lucky ones. Why? Because WE had Addy too. So, even though we lost Reagan, we still have a piece of hope to hold onto, unlike the families who lost their one and only child. Now, in Level II, a different feeling. One night, we saw a young (maybe 17) girl in there. Her little girl was in an open warmer bed (this is a step below the incubators). One of the first rules of the NICU is you don't do anything with your child unless the nurse tells you to do it. These babies all have monitors and most have IVs, feeding tubes, and some form of oxygen supply. It is NOT easy to pick these little babies up. This young mother just picked up her child out of the warmer bed and started holding her without asking and the baby started screaming. The nurse had to stop what she was doing with another baby and take care of the situation. Then, upon their conversation (which we were honestly trying to ignore!), we discovered she was young, either just graduated or still in school, the "daddy" just went to go by the car seat that day, the mother did not know what a 5 point harness on a car seat was, she talked really loud to her baby (babies in the NICU can't handle that kind of stimulation), and the list goes on... And, we sit there. Me holding Addy and Charley just shaking his head...wondering why us? This mother most likely has no insurance, and we are paying the bill for her and her baby in the NICU (FYI, NICU bills are around $2500/day..yes PER DAY PER CHILD not including special medications or admission). Here we are grown adults with good jobs, a nice home, and a good marriage and we could not only NOT conceive on our own, but we had to bury our daughter 2 weeks ago and also have our other daughter in the NICU, yet this young mother is sitting there having no clue what is going on and playing with her daughter (who is obviously a preemie) like she's a puppet. Needless to say, this baby moved into an incubator faster than any baby we've seen move into an incubator. This way the mother couldn't oversimulate her...by the next day, she was also moved to Level I.
Another story of the NICU. This one not really appalling, just painful on my heart. I got to feed Addy her first bottle on Thursday. It was a wonderful experience. On her 2nd bottle, I was informed that they were going to get 2 admissions very soon, a set of twins. They let me stay and bottle feed Addy for her time limit of 30 minutes and then let me tube feed her the rest by hand (about another 20 minutes). Well, things started hopping and they didn't mind me staying there. They even let me stay during shift change, something you aren't supposed to do, but sometimes this one slides when you are there for feedings and you've been in the NICU long enough AND you've had a situation like we've had. Well, our fave nurse told me it would probably be best to put Addy back as the babies were coming soon and to give them about an hour. I understood. That did not bother me the least bit because I knew parents were probably asked to step out for our daughters admissions. It's the least we could do in return for the favors granted to us up front. What I wasn't able to handle was returning to the NICU and seeing TWINS... seeing the one thing we were supposed to have, but don't. Two living, breathing beautiful babies. That was hard. Not that it was anyones fault, as it wasn't, but my heart just felt heavy and again wondered why?
Deep down, I know bits and pieces of the why? I'll never truly know WHY this all happened to us, but I know I will forever feel blessed to have Addy with us. I know we are the lucky ones when I see other parents lose their one and only child. I know Addy will be extra loved and extra spoiled by SO many people, even complete strangers, because they know her story....and deep down they feel that loss just a little bit too and the way to help sometimes fill that void is to remind yourself how extra special Addy is because of all she had been through. There is something truly special about having an angel for a sister, a daughter, a granddaughter, a niece... We know that if Reagan didn't have the problem she did, Addy wouldn't have done as well as she has (Babies under stress in the womb mature faster - Addy certainly did..). We know a lot of whys, but not the main "why" which we may never know... Yet, we are so forever thankful for this situation..
Many have NO idea what to say to us. And, that's okay. We often get the basic "My condolences on Reagan and my congratulations on Addison." What else is there to say? It is the unfortunate truth of the situation. We might get upset from time to time from hearing this, but NEVER take it personal. We will NEVER get angry with you for not understanding our situation. This is one situation where you must walk in the shoes to know what to say. We just hold you never have to live this pain. Sometimes, we don't know what to say to you. A few of the hardest things in our lives right now are 1) making sure people know we have TWO daughters and 2) explaining to strangers that we just had twins and lost one without leaving a heavy burden on them. This situation wasn't the fault of anyone... not me, not Charley, not Addy, not Reagn, not the doctors, not the nurses... not anyone... And, we just cannot figure out a generic answer to some of the questions people ask us. In time, our hearts will start to heal enough to allow those conversations to not be so difficult. So, please don't feel awful about saying things to us. The worst thing you can do to us is to forget Reagan, as she will never be forgotten to us...
Even at my deepest, darkest moments in the walk through grieving a child and celebrating another one at the same time, I know how truly blessed we are. How truly lucky we are.. You may wonder why. It's because of people like YOU. It's the crazy things like receiving baby congratulation cards, gifts, and sympathy cards on the same day. It's the amazing little miracles that have come from this beautiful 23 days. In 23 days, we have discovered our true friends. We have lived more in 23 days then we may ever live in our entire lifetime. We have celebrated, grieved, loved, and leaned on so many for support. And, so many of you have been there, standing behind us to hold us up when we fall. And, that is why we are so blessed. We have so many that have reached out to us in so many ways. We want EVERYONE to know we appreciate the support and although we may not ask for those gracious offers right this moment, please know we hold those offers dear to our hearts and although we may not need them RIGHT now, but we might later... and we will need all of you as we continue forward.
Just a FEW examples of the amazing support we've received. Many of you know we have volunteered for youth bowling for many years now (Me mainly, but I got Charley slowly involved over the years). Our state Jamboree (big meeting for the year), was this past weekend. We wanted to go badly, but it wasn't feasible. Charley was just flat exhausted. I couldn't leave Addy and I just had major surgery. So, with a heavy heart, we stayed because we knew we needed to. Just yesterday, the most amazing thing came in my mailbox. A check for $315.00 from the state board. We were shocked. I have read the letter probably 10 times now. This check came from the halfpot they do during dinner at the banquet. This money has ALWAYS and I mean ALWAYS gone straight back to the kid's scholarship money. Never have I seen it given out in my life. And the split of the pot was $315.00 and it was given to Reagan. It's to help us remember Reagan in whatever way we need to, and we will do that to it's utmost value and then some.. How beautiful is that? We are so very grateful for this and for the many stories like this.. A few other beautiful moments are my Great Aunt Cookie making an "extra" blanket just for Reagan. We had buried her with the blanket she gave us for our baby shower. That was Reagan's blanket and Aunt Cookie remade a 2nd one so we will have it to cherish. My Aunt Sandy did the same. We buried Reagan with her bracelet and Aunt Sandy made us a 2nd bracelet. Or the amazing cards we have received. Some with amazing donations to help us remember Reagan and to help us always remind Addy that she had a twin sister. We have an assortment of beautiful angels. And, we plan to put shelves in Addy's room and decorate her room with some beautiful momentos. We plan to release lavendar balloons on Reagan & Addy's birthday every year to celebrate her little life. And, with the gracious donations we've received, we plan to give Reagan a beautiful headstone that anyone can visit and be reminded about how precious life is and how much of an impact that a little girl that lived 1 hour and 27 minutes had on so many. I'll never forget the line of cars that followed us to the cemetery or the amount of people that paraded by her casket. Who would of known our daughter could of touched so many lives? Again, a blessing... a beautiful moment...
In just 23 days, our lives have been changed forever, not only by our daughter's brief, yet amazing 1 hour and 27 minutes or by our other daughter's amazing 23 days in the NICU where she has jumped leaps and bounds, but by our friends and family and the strangers that have become friends and family... For that, we are forever blessed and grateful.
I will continue to pour my heart into this blog with the good and the bad. It is almost a "healing" process for me. And, all the wonderful comments made to this blog are healing too.
A few more things before I move onto Addy.
1) We received a beautiful letter and bracelet today from a family member. She has submitted Reagan's name to the 2007 National Share Walk (ironically, I had just read this information a few days ago when I requested a grievance packet from the SHARE organization). It's sort of like the Race for the Cure, but it's called the National SHARE walk (Share is for pregnancy and infant loss support - there is one at St. Mary's, where we delivered). They have smaller walks throughout the country, but the main walk is in St. Louis. She submitted Reagan's name and she is an "Angel in the Crowd." Tera, my sister-in-law, had said to me that she wanted to do something in remembrance of Reagan each year as a family..something like a walk. Ironically, I think I found this walk at Deaconess hospital. I'll have to find more info on it, but for now..this is what I know: (BTW, thank you dearly Marcia...what a beautiful surprise you left in my mailbox today...I cried with joy and sadness all rolled into one).
SHARE Website
Click Here to get information on how to Register to be an Angel in the Crowd for Reagan Burge (Deadline: August 28th)
This is just preliminary Info..I'll try and post more later. By sponsoring and being an Angel in the Crowd for Reagan Dawn Burge, you are helping raise money for support to bereaved parents. It's an amazing journey for us that has only begun and we know SHARE will be there to help us through...
2) In conjunction with the share walk, you'll notice October is Infant and Pregnancy Awareness Month. I hope I can come up with something special to do for Reagan then, but I did discover that it seems Deaconess Hospital does a "Walk to Remember" for this month. I'm not sure if it's part of the SHARE walk or not, but I need to see if it is set up like teams or not... Time has not been on my side lately... Here's the link for that:
Walk to Remember at Deaconess
OKAY! Now, onto the good stuff.. Little Miss Addison!!!
Some brief info:
Saturday 8/18/07
3lb 5.1oz - 28ccs of formula every 3 hours by tube
She got moved into a regular incubator! (Not the higher tec ones - They change incubators every 14 days to decrease risk of infections). She also got moved to Level II care this day too!!
PLEASE! No Papparazi!
Ahhh...just chillin' in my isolette! Can you see I've already begun my modeling career?
Sunday 8/19/07
3lbs 5.6oz - 28ccs of formula every 3 hours by tube
Addy: Meet your new incubator/Incubator: Meet your new roommate!
Monday 8/20/07
3lbz 7.4oz - 30ccs of formula every 3 hours by tube - THAT'S A FULL OUNCE!!!
She was measured today and was 41cm long (or 16 1/4inches), so somewhere..she shrunk!
She WAS 16 3/4inches, but based on how they have to measure babies I can imagine that there is some inaccuracy here! Looks like she's still just a measily 16 1/4 inches long though...no growth there!Just for some fun size comparison! Yes, even at 3 1/2lbs...we are tiny, but beginning to fill into our own skin!
See my little bracelet that my Great Aunt Sandy made me? It's still so big it just slides right off my hand!
Tuesday 8/21/07 - HAPPY BIRTHDAY AUNT TERA!!!
3lb 10.1 oz - 30ccs of formula every 3 hours by tube
Addy ROOTED for food today! She was looking for it because the nurse was about 15 minutes late on her feeding (nothing new.. happens all the time) and she let out a yelp because she knows that she gets HUNGRY now!
Just wishing my Aunt Tera a VERY Happy Birthday!
Supportin' Mom & Dad's Alumni! GO EAGLES! (The USI Alumni association sent one for Addy & one for Reagan).
Ya, it's WAY too big, but I'll EVENTUALLY grow into it!
Maybe sometime next fall?Wednesday 8/22/07
3lbs 10.2oz - 30ccs of formula every 3 hours by tube
We found out today we would get to start bottles on Thursday! Oh, and when we went to visit at night, miss Addy decided to explode her diaper with poop! The nurse handed her to me and the SECOND my hand hit her tiny butt she just let it rip...so we get a diaper (several minutes later mind you), and go to change her and 3 diapers and a 1/2 a bag of wipes later she decides she's done pooping! No lie..the nurse and my mom and I were just laughing hysterically. People came from across the room to see her exploding. We got "some" pics of this little event but most are blurry..but here's an after photo of her..she looks like she feels MUCH better...
I'm goin' grow up to be THIS big!
Thursday 8/23/07 - HAPPY 3 WEEK BIRTHDAY ADDY!
3lb 10.7oz - 30 ccs every 3 hours - FIRST EVER BOTTLE!!!
With the start of bottles, she gets a 30 minute time limit. Whatever she doesn't eat in 30 minutes, she gets the rest through her tube. Plus, they are trying to shorten her tube feeding times from 1 hour infusions to 30 minute infusions. This takes a little time. Every baby knows how to suck, swallow, and breathe, but doing these together takes a LOT of effort and most babies cannot do this until they are 34 to 36 weeks gestation. Addy has started to coordinate this effort at just 32 weeks and 2 days gestation! (Or, that's what she would of been had she been inside my belly still). Plus, this is just 2-3 times on the bottle per day. She gets breaks inbetween bottles. Trying to coordinate this effort causes stress to her and she could start to lose a little weight or not gain as quickly. It just really depends...
9am feed - Bottle - She took 10ccs - GREAT JOB!
6pm feed - Bottle - She took 8ccs
3am feed - Bottle - Her nurse Rachel recorded she took an entire 30ccs of formula!! (ONE full ounce!)
FINALLY! Mommy stuck me in some sleepers that were mine! Don't I look cute?
Friday 8/24/07
3lb 12.7oz - 30-35ccs every 3 hours
12pm feed - Bottle - She took 7ccs (I was all geared up that she might take more, but the nurse reassured me that sometimes they have a "honeymoon" period and take a bunch and then slack off.. So, we tried slow flow and standard flow nipples quite a bit to see if she could handle the standard flow to get more milk out with less effort..
6pm feed - Bottle - 10 ccs
3am feed - Bottle - 10 ccs
LOOK AT ME!! Suck, Swallow, Breathe!! (And yes, those fingers of mom's are stragetically placed to aide in this bottling effort. A finger under the chin to get her jaws moving when she slows, a finger to keep her cannula in, a finger on the bottle, and the other 2 fingers are free to stimulate her cheaks and get her going there too!)
And, just because I'm so cute! Now I've got the purple outfit, purple pacifier, and we just need a purple blanket and if we could get a purple oxygen tube..we'd be in business!
Saturday 8/25/07 - ANOTHER BIG BIG DAY!!!
3lb 13.6oz - 30-35ccs every 3 hours
Well, we had a VERY NICE surprise this evening... Addy doesn't have her cannula (the tube into her nose that pushes a low flow of oxygen to help remind her to breathe) anymore!! I was SO not prepared for this one! She now has a Oxyhood that sits over her face and helps with her breathing in her isolette, but only when she needs it and her oxygen levels fall below 88. She does have to have her cannula in when she gets bottles though, so it's not completely gone. And, we've been cautiously reminded that the cannula will likely come back at some point, but this is the process of weaning...
12pm feed - Bottle - She took 17ccs!! WOOHOO! This is the most I've gotten her to take. She did really well... Feeding a Preemie is hard work, but the nurses give me tips left and right and I'm SLOWLY trying to figure this one out. I've fed numerous babies in my lifetime, but it is COMPLETELY different than feeding a preemie!
6pm feed - Bottle - She took ALL 30ccs!!!!! YAHOO!! I couldn't believe it! The nurses there have reassured me left and right that they feed these babies all the time, so don't worry if we can't get her to take as much. We're learning right alongside Addy. But, we were extremely to hear she is taking bottles so well. That's a tough task.
See my Oxyhood? It just sits over my face when I need it. No more cannula for now either! (only when I bottle feed) And, see the stickers daddy snuck into my isolette when mommy wasn't looking? Looks like I'm going to be a UK and Cubs fan. Daddy thinks I'll just sit and watch sports with him, boy does he not know what I'm about just yet!
Here is Addy's oxygen machine by her bedside. The top cream colored monitor tells the exact oxygen percentage (Room air is 21%, Addy breathe typically room aire and this cannula just pushed a low flow to the back of her throat to remind her to breathe. She occasioanlly needs extra oxygen, like during bathes, getting bottlefed, etc..any type of stimulation typically warrants an increase in O2.
This is the cardiac monitor and the oxygen saturation monitor. The cardiac monitor monitors her respiratory rates and her heart rate. When Addy has a Brady, her heartbeat literally goes from 150+bpm down to 50bpm. Not abnormal for preemies, but this machine helps catch this and monitors the babies. The Oxygen sat monitor measures how much oxygen you are truly getting.
LOOK!!! NO CANNULA!! See them FULL cheeks! We're GROWING!!!!
And, I've learned how to do video on the digital camera AND learned how to post it to YouTube (what a GREAT little invention!)...so I'm going to start sharing a little video of Addy..
This was on August 10th when she was just 8 days old...it's her sucking her pacifier.
Addy sucks her pacifier
I am so glad Addy is doing so well. She is really growing now! Go Addy, keep it up! Addy has what she needs, loving parents and good care.
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Kaycie, Charley & Addy- Wow, so much has happened in such a short amount of time! The pictures are amazing- I love those cheeks!!!!!
I am so impressed- she is doing awesome with bottle feeding!!! GO ADDY!! Continuing to keep you all in my thoughts everyday- take care! Sending you all lots of love!
Kaycie- I am sure that you have found it already- but one special thing that it is done around the US in October is on the 15th at 7pm, it is the wave of light- we all light a candle of hope and remembrance of the angels that have touched our lives- the balloon release will be beautiful- I will be thinking of you all while participating in our local Walk to Remember in October as well. Take Care-
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The pics aren't coming through on my comp, what's up?
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Look at those beautiful cheeks filling in! I'm so proud of Addy - I think about her all the time.
P.S. I don't know exactly what it is, but she looks so much like your mom!
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I'm so glad to hear and see that little Addy is doing so well. You are so right - sometimes it's just impossible to find the right things to say. Please call or email me if you need anything!
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