Limited Edition

Love it!!  I think I am going to refer to Sadie as a Limited Edition.  There are VERY few kids in the world that share similar brain issues as her (and I just found them in the last couple weeks) and as far as I know (and the Dr's) there are no kids that have all the exact issues as her.  So as far as I am concerned she is the only one from a Limited Edition.  How lucky am I ?!

Yes, I have changed

If Sadie was a typical child....

  I would be living the way I always have.  I would still have 3 beautiful girls, married to my husband, living in the same house with one dog and one cat, have nice vehicles, and working as an RN at a job that I love.  Be surrounded with family and friends that we love and get along with and I would be taking my girls to school and dance and to the park and to play places and anything else I wanted to do with them.  I would be living the "perfect" dream.  I would still be living in a naive bubble.  That nothing "bad" could ever happen to me.

 

But Sadie is not a typical child...

  She burst that bubble.  I do still live that exact same way.  I am living a dream.  However, it is no longer the "perfect" dream and I am no longer naive.  Bad Different stuff has happened to me and I am now living the "realistic" dream.  Is it the perfect dream? No.  Is it a bad dream? No.  Is it a realistic dream? Yes.  Is my life better being less naive? Yes.  Have I changed? Yes. 

 

  It used to bother me (a lot!) that people said that I changed after I had Chloe.  "You grew a heart, you became softer".  I, however, did not see that I changed.  I was the same old Tammi that I always was.  Yes, I had more responsibility. Yes, I no longer partied.  Yes, I no longer was selfish and thought the world revolved around me.  But I still saw myself as me.  Now that Sadie has been on this earth for a little over a year, people again are saying to me "I can't believe how much you have changed."  At first I thought "really?  again?" and I got offended.  I don't know why I did, but I did.  I think cause it makes me think that they thought I was cold or heartless or that I didn't really care, that I was selfish.  It makes me think that they didn't think very highly of me. It made me sad.  But as the year went on and more people said it to me I thought (and pardon my language) "Hell ya I've changed!"  I have a child that has taught me more in the last 13 months of my life then I have learned in the last 33 yrs prior to that.

How has Sadie changed me?

(I read this on another special needs mom's blog and I was going to say something similar to it, but she said it so well and described exactly how I felt.  Why try to reinvent the wheel when it works perfectly, right? I hope this mom doesn't mind.  Obviously, I tweaked it a little bit.)

 

  I would never know that love like this existed. There are no words to explain how you love someone when you realize that their time is limited. I wouldn't realize that that is how everyone should be towards the ones they love, healthy or not.

  I wouldn't appreciate the health God has blessed Chloe and Aubrie with and how grateful I am for it. I wouldn't have known what an amazing heart God gave them and that Sadie's illness has taught them to be so kind, compassionate and caring.
  I would never know that so many children suffer so much each day and have heartbroken families that endure more than they should in ones lifetime.  I would have never known how strong I really am. A strength given to me by God, knowing that I could never do this without Him.

  I would never know the full extent of God's love. I wouldn't realize that without Him, my life is meaningless. I would have lived my life in vain, thinking that having the "smartest" children is what makes a good mommy, thinking that our success in life would be having a nice house, money in the bank and cute clothes. Not knowing that what determines a person is not what they have but what they do with what they have.
  I would have looked at children with disabilities as a tragedy instead of what they truly are, a blessing from God Himself. I would have looked at the parents with sympathy, silently thanking God that it wasn't me in those shoes instead of knowing what an amazing opportunity that they have been given.
  I would have never realized what absolutely amazing people there are in this world. Ones that bend over backwards to help us in every way. Our family, friends, Sadie's therapists, and people we haven't even met.
  Sadie has forever changed my life. While I have cried more than I thought could be humanly possible, its only because of the love that I have for her, a love Christ instilled in me, a love that Christ shows me each day. If I had the choice, there is no question I would want Sadie to be typical/healthy.  Would I want to be the person I was before all of this? No, not at all. I will spend the rest of my life praising God that he thought of us so worthy to have a special blessing like Sadie. I will pray that God shows me what he wants me to learn from this, ask him to show me His purpose so I can fulfill the role He wants for me.
  Because of Sadie, I know true love, true happiness.  I am so blessed to be Sadie's (and Chloe and Aubrie's) mommy.

So have I changed? Yes!  I am proud of it and am no longer offended when people say it to me.  Instead I say "Thank You"

*Look at all the lessons Sadie taught me this time.  She is simply amazing!*

New changes

  Up to this point Sadie has been a "normal" infant.  Yes, she has a feeding tube, but she's not on it 24/7 and can be disconnected at anytime.  She does not need to be kept in a bubble because of health issues, I use an infant carrier/car seat, she can go in and out of stores without a thought, I buy her formula at the store just like any other mom.  No one would ever know that my child is any different from their child.  My life is "normal" (at least in those aspects).
  The time has come for some changes.  Changes that are going to change my life again. Not that they are bad changes, but still they are changes.  I will have to tweak my life a little.
  The first change is now that she is 1 yrs old her vitamin and nutrition requirements have changed.  Most babies move to cow milk and start adding more table foods, juice, water.  Not Sadie, she has moved to a new formula.  A formula that I can't buy at the store.  A formula that can only be delivered by a medical supply company.  A formula that is especially made for babies that are only tube fed. This is a reminder that she IS different.
  The second change is that she needs to move into the next size car seat.  Her infant one still fits her, but it's getting a little to heavy for this mama to carry.  I went shopping and found one that rides both forward and backwards and has extra head and back support.  One that actually says that it is recommended by moms of special needs children.  ANOTHER reminder, she is different.
  The third change is that I had to buy a new stroller.  Sadie is not ready for a wheelchair, but she needed a little bit more support then the stroller I currently have.  Again ANOTHER reminder.
   All parents have to get new car seats, food, strollers.  I had to also with my other two. This is no different, right?  WRONG!  The big deal is this....
  I no longer will be able to run into a store.  With an infant carrier I take her out in the carrier, put her on the front of the cart and shop.  Now, I will have to put her in a stroller for 2 reasons.  1. She absolutely hates to be held for more then a few minutes.  I do not know why, but that's reality.  2. I can not put her in the front of the cart like a normal baby/toddler because she does not have very good head control yet. This freaks her out, which causes her to arch her back, which causes a lot of drama, and takes a long time to calm her down.  Sadie is not exactly the easiest baby to calm down.  So if I go shopping by myself I will have to put her in the stroller, which means I can no longer push a cart.  I can only use a hand carrying basket.  Which means I can no longer buy larger items or a lot of items.  As all parents know, it's easier to go shopping with as few children as possible.  So I do the weekly grocery shopping and get all the essential house things while the 2 other girls are at school.  I will no longer have the privilege to do this.  I will have to go when my husband is home in the evening and who wants to go shopping in the evening after a busy day of everything else.
  I know this all sounds soooo ridiculous when it comes to the big picture.  I have my daughter, she is alive, she is healthy.  Who am I to complain about such silly things. This is just a change that I have to adjust too.  I will.  This will not kill me.  With all this being said it reminds me of one of my favorite sayings.  "If you don't like something, change it.  If you can't change it, then change the way you think about it" (quoted from Mary Engelbreight). That is what I have to do.  Change the way I think about it. 
  So that is what I am doing.  Changing the way I am thinking about it.  Instead of seeing this as a bad thing I will look at the fact that I can no longer spend a lot of money when I go shopping.  I can not go shopping as frequently or conveniently as I once could.  I will be able to go shopping COMPLETELY kid free.  I will be able to get out of bedtime duty at least one more time a week. :)  The formula is now covered by insurance so I can save some money AND it will be delivered to my door.  The girls will be able to have a little more quality daddy/daughter time in the evening one more day a week.  I will no longer break my back carrying that heavy car seat or carrying a bunch of groceries in the house.
  That is my start to thinking differently.  Change is hard for all of us in one way or another.  Some people adjust better then others.  I'm generally in the middle of the road when it comes to change.  I don't like it at first, but I can usually see why the change needs to occur and that it really is not as bad as it seems when the change is first introduced.

Mixed feelings

Sometimes people will say to me "I'm so frustrated with my kids, they won't stay in their bed at night"  I would like to say "be glad they are able to get out of their bed and walk".  I would give anything to have this be my biggest problem.  At the same time it's nice to hear about normal, easy problems. It keeps life normal.  Especially when I have 2 typical developing children.  At the same time, I want to scream and say "get real, this will pass enjoy it while it lasts, there are way bigger and worse problems that you could have".  Oh, how I look at things so differently now.

Metabolic/mitochondrial crash

  So last week I told everyone about Sadie being sick with some sort of a GI bug.  Come to find out the Dr thinks she was in some sort of a "metabolic/mitochondrial crash".  I don't really know how she came to this conclusion, but that's what she said.  I explained everything that happened, the time period, what we did, and how she responded.  Dr. said it sounds more like a "crash"  then a GI bug.  She said that if she wouldn't have come out of it or if we would have done blood work while she was sick all of her levels that are associated with mitochondrial disease would have been way off.  I had a choice to have her blood drawn to see if her levels are back to normal.  If they aren't normal then we can see how such a "short lived crash" affects her body by how far off her numbers are.  I choose not to have her blood drawn because 1. she is doing much better, still a little off, but better and 2. she has horrible veins.  The last time they drew her blood, it took 20 pokes.  Ridiculous!  I was not with her while this was happening because she was under anesthesia at the time for a procedure.  They are lucky she was out and that I wasn't with her or it would have been stopped.  So anyways, that is why I didn't have her blood drawn. 
  So for those that are wondering what a "crash" is, I don't really know.  I can tell you what she was doing.  It started with her just being fussy, a little gaggy, but she was doing ok with her food.  Then she became a little more sleepy, wasn't making eye contact, wasn't doing any of her new skills she's been working on, was becoming increasingly gaggy, wasn't being her normal easy going self.  Then she turned to lethargic, couldn't tolerate her food (or pedialyte), no wet /dirty diapers, was very pale and waxey looking, and she was extremely fussy. Lethargic and fussy in the same sentence doesn't really go together, however it was like she was really out of it, but she wasn't comfortable. Make sense?  So after this went on for the entire day she calmed down and fell asleep.  She slept, and slept, and slept. While she was sleeping I was giving her pedialyte in her g-tube, which she was accepting and not gagging on.  So I kept her hydrated while she slept. She slept for 32 hrs straight! It was crazy.  She would wake up while I changed her diaper and put her in different positions and then she would fall right back to sleep.  After that 32 hrs she woke up and was wide awake, alert, making eye contact, cooing, giggling, and was tolerating her regular formula.  It still took her a while to get back into working on her skills and she was pretty stiff, but she came out of that by the next day.
  So after that conversation is when the Dr came up with the fact that she thought it was a "metabolic/mitochondrial crash".  She said all that going on with no fever and that she popped out of it after the electrolytes (pedialyte) were given does not sound like a GI bug, but a "crash".  What?!  I've never heard of this and I am an RN.  Why didn't anyone (Dr) tell me to look for something like this?  So after I got over the fact that I've never heard of this, I asked what I was supposed to do.  She replied that next time this happens I need to take her to the hospital and get IV dextrose and a lot of IV vitamins.  OK, good to know this now.
  So over the weekend I asked my coworkers and googled m/m crash and no one has heard of this.   So is this something my Dr made up?  Does she just have experience with other kids and this is what works for them?  I'm not sure.  I did find other parents that have described very similar situations with their children that have a mitochondrial disease and they do call it a mito crash, but there is no official medical articles/journals that describe a "mito crash".  After that conversation I felt very guilty about not doing more, but at the same time I brought her out of it on my own and she is doing great (except for the cough).  So I decided that there is nothing I can do about it now, and I learned something new about the disease and my daughter.  I can only go forward from here.

PS. Another lesson learned from Sadie!

"As long as they are healthy"

   I remember I ran into an old friend at the very end of my pregnancy with Sadie.  She knew absolutely nothing of what was going on with my baby and it was not something that I went around sharing with everyone.  We talked about when I was due, and if it was a boy or girl, and what names we had picked out.  You know, all that typical pregnant conversation questions that you have with someone.  We laughed about different things and compared pregnancy stories.  At the end of the conversation she said something that no one else had said to me (probably because most everyone knew about what was going on with the baby and just avoided the subject or avoided me).  She said "The only thing that matters in the end is that the baby is healthy, right?"  I just smiled and replied "Yep".  Those words echoed in my head for days, "as long as they're healthy, as long as they're healthy, as long as they're healthy."  I wondered how many times I had said that to someone who knew that their baby may not be "healthy" when they were born.  I know that this girl had not meant to upset me, and she had no idea that she did cause I walked away smiling.  That should not have been an upsetting statement, but it was to me (at the time). I wanted to become defensive and yell, so what if she isn't?  Is that not ok with you?  Are you going to dislike my baby?  Are babies only accepted if they are healthy?  I know it was just my hormones, but that statement made me angry.  Looking back on it, it was ridiculous.  At the time, though, that is how I felt.  I became soooo angry with a completely innocent person.
  "As long as they're born healthy"  That statement rings a whole new tune to me. As I've learned a child can be born with abnormalities and still be healthy, but does everyone see it that way?  I certainly didn't before she was born.
   Two lessons learned by Sadie 1. that statement is not that great to say to a pregnant woman, cause you just don't know and 2. abnormalities do not necessarily mean sick, they mean that God just mad them differently.


 

Ugh!

  So Sadie is sick, again.  I guess the Dr's and I jinxed ourselves.  She has some type of a GI bug.  She hasn't been able to keep anything down all weekend.  She would cry every time anything would enter her stomach and she would gag and gag and gag.  It was horrible.  The only thing that would calm her down was taking a bath.  So in about 16 hrs we took 4 baths, including one at midnight and one at 3 am.  After that bath, she threw up again, I cleaned her up, gave her another message and some Motrin and she fell sound asleep.  In fact, she is still sleeping and it is 3 pm.  I think she is just catching up on her sleep because she has not had very good sleep in the past 60 hrs and she hasn't had her vitamins for her mito disease so that could be why she is so sleepy too.
  However, I think she is turning the corner today.  Yes she is sleeping, a lot, but thanks to that G-tube I can still give her fluids.  So starting with a little pedalyte this morning and increasing it all day seems to be working.  She's not crying or gaging so this is all a good sign. Yesterday, she couldn't even tolerate the pedalyte.
  I did have to cancel her tube surgery for tomorrow.  I was a little bummed. I really want to know if it is going to change her hearing even the slightest bit.  But I didn't think being dehydrated, being off her vitamins, and having a slight upper respiratory problem would go over very well with the ENT or the anesthesiologist, so we will just reschedule when she is feeling better.  Hopefully, it will soon.  Prayers needed.  Thanks!

WOW!

   Another good Dr visit.  I'm really not sure what to do these days with all these good comments from Dr's.  I might go into shock if this continues.  The one today was priceless.  Remember that Dr that made me cry (hard) at the very beginning of this journey.  The one that told me not to expect much from Sadie and I told her to just wait and see, my daughter will prove her wrong.  Well we saw her today.  An hour and half she spent with us.  Going over everything and more.  This is what she said to Sadie "Well you have exceeded our expectations, you have skills we would have never imagined that you would have, we are pleasantly surprised with your development and health, you are making me eat my own words, what else are you going to prove me wrong on?"  So of course I had to get my dig in and said "See, don't underestimate any child.  The love and will power of a mother will over power the medical world.  She still has more to prove to you.  Just wait and see!"  I smiled and walked out.

Premature Awareness Month

November is Premature Awareness Month.  The Dr's say that Sadie was premature.  They say that she was born at 36 wks 4 days.  I personally don't think that she was.  I think I had her at 39 wks.  But whatever!  She was IUGR (inner uterine growth restricted), so she was small and had similar issues to what a preemie would have and obviously she has birth defects.  The March of Dimes not only supports research for prematurity and birth defects, and promotes healthy babies, but they are a major support for families while they are experiencing the nightmare of the NICU and they support different programs in the community.  Since they are so invested in helping us to have healthy babies the least we can do is return the favor and donate money to the cause.  You never know when this could become a personal issue to you or someone you love.  You can donate year round any amount or they have a big walkathon every year where you can create teams and raise money that way.  Their website will help you learn how to promote your team and other useful things to help you on that journey.  I have a link on my home page or you can go to www.marchforbabies.org for more information. 

Sadie is healthy!

  Sadie had her 1 year check up last Friday.  It's crazy to think it's really been a whole year, but anyways... she is finally on the charts.  Hallelujah!!!  The Dr's can get off my back.  The Dr's have been so obsessed with getting her on the growth chart since the day she was born.  They were driving me crazy!!  "We have to add more calories to her diet."  That is what I heard for months.  I thought to myself: who cares if she's not on the chart, as long as her curve is going up, that is all I cared about.  Well the Dr's didn't see it that way.  "We need to make sure she is getting enough calories to get her body to grow and gain weight and have enough energy and fat to help her brain develop to the best of it's abilities."  I understood that, but she was starting way behind your typical developing baby, so stop trying to compare her to them and putting her on "their" chart.  So frustrating to listen to the Dr's compare her, but now they can't, well not completely.  I guess technically they still can when it comes to her height and her head circumference.  BUT her weight is in the 10% for children her age.  I can celebrate  that.
   The Dr then proceeded to check her all out, check her development. The Dr then stops, turns and looks at me.  She says "This little girl is amazing.  She is nothing like we would expect her to be like with the abnormalities that she has with her brain.  She is behind developmentally, but she is working on things at her own speed.  She is a determined baby and she wants to move and I'm pretty sure she will get her way if she is anything like her sisters.  Her sisters are strong, independent, sweet girls with high self esteems.  Sadie is no different then them, she is just on her own time table."  I was shocked.  Not that I didn't know this, but I'm so used to getting bad news when I go to the Dr's that is just threw me off guard.  As I was trying to choke down tears, the Dr then continues "and she is the most healthiest special needs child that I have.  She is 1 and she has not been seriously sick, she's never been to the hospital/ER, she doesn't have seizures, she doesn't have respiratory issues, yes she can't eat orally, but she handles her tube feeds very well, she smiles and laughs, and like I said she has determination. I know you don't keep her in a bubble so she must have a very good immune system.  I'm not sure what you are doing with her, but keep it up."  All I could say was "Thank You".  I was trying not to break down in tears cause that is what I really wanted to do.  All the work I've done with therapies and Dr's are proving to be helpful.  Finally somebody recognizes it (other then family).  Then at the end of the appt Sadie got 5 shots!  My poor baby, but guess what?  She didn't even cry.  She whimpered a little bit, but never cried.  Her Dr poked her head back into the room and said "see, I told you they were strong".  (Chloe also had her 5 yr check up at the same time and got 3 shots and she never cried or fought it either)
  When I got to the car, once again I started to cry.  But this time they were tears of happiness.  It only took a year but we finally got a good report from a Dr.

You just don't know

   Many people have said to me that they did not know all this was going on with Sadie. That my actions do not show it. That the words in this blog surprised them. Some were angry that I did not come to them for support. It could be for a couple different reasons. 1. I'm kind of a private person. 2. I don't get people involved with my drama in fear of judgement and sometimes the less people that know things, the better. 3. It's a defense mechanism that my subconscious is doing to protect me. I don't know why I choose not to share all this earlier, probably because it wasn't the appropriate time. Everything happens when it is supposed to.
  I may look and act like everything is fine and dandy but it doesn't mean that I'm not crushed about my daughters health and I hate that she has to fight for everything that comes so easy to others; that man that cut you off on the highway, may have been rushing to the hospital to see a loved one that is dying; that woman that you thought was giving you a dirty look, could have just found out her husband is leaving her and was thinking about the situation; your neighbor that didn't wave back, was in his own world because his wife just found out she was dying of cancer; the woman that walked away from your newborn baby without awing and gushing all over them, is having a hard time conceiving not being rude; that woman that was just caught steeling and you are judging, is a single mom with a deadbeat sperm donor and was just trying to get food to feed her kids; that woman that complains of pain all the time, has a debilitating health issue that you can not see.
  My point is that you just don't know what people are going threw.  What is on the outside, is not always what is on the inside.  Some people are better at hiding it then others, and some could actually learn to hide it a little more.  We are who we are, except others, and try not to take things so personal.  You just don't know how the other persons day, week, month, year, or life is going.  Smile and try to do small kind acts daily.  It really does make you feel good and makes a difference in others lives.

Hurricanes and Halloween

  Hope everyone on the east coast is doing well and are safe and dry and with electricity and heat again.  Who needs Halloween to be scared when you are living a nightmare during a hurricane (or any disaster for that matter)?  Prayers are going out to all those families.  It always amazes me how people come together during a tragedy to help each other out.  It's awesome to see, but it's too bad that it takes a tragedy to make that happen.  Wouldn't it be nice if we could be like that all the time?  Maybe someday we can all get back to being nice to each other all the time.
   I know this doesn't sound right and I don't really know how to word it.  So just please don't take this the wrong way.  My favorite scene/picture from the whole hurricane coverage was when they were evacuating the hospital.  All those nurses and Dr's trying to keep all those patients safe and alive.  Carrying them down multiple flights of stairs and not caring or complaining. However, the one picture that really got me and brought tears to my eyes was when they were transporting those little babies from the NICU and they had to hand squeeze oxygen into those babies to keep them alive.  That's dedication and a lot of heart coming from those nurses (and Dr's). I'm not sure if it's because I am a nurse or because I am a mom to a former NICU baby or both, but it really and truly touched my heart.  It made me proud to be a nurse.  They represented nurses in such a positive way.
   On another note...
   Happy Halloween! It's been a fun few days with party's at the girls school and picking pumpkins and carving them and then trick or treating itself. It's been cold and rainy here just like everywhere else.  I was thinking though, if they are going to make all these cute little princess and fairy costumes for girls and not cute costumes that are warm, then we need to move Halloween to the summer.  The kids are so bundled up that you can't even see there costumes.  So I made the girls get dressed twice.  Once with what their costumes are supposed to look like all cute and stuff, and then I made them put all there warm clothes on with it.  They loved me for it.  NOT!  I included some pictures.  Hope everyone had a Happy Halloween.  For those kids that missed it and were disappointed do to weather, I'm sorry, hopefully they will have a make up night.  More importantly I'm glad your safe and able to read this.



Chloe and her pumpkin

Aubrie and her pumpkin

 

 

 

Sadie asleep as always.  Too much fun and excitement picking out her pumpkin.

Chloe the ballerina midnight butterfly

Chloe bundled up  (refused to wear a hat, went to one house and then asked daddy for her hat.  Good thing he took it with him)

Aubrie the blue fairy (blue is her ultimate favorite color)

Aubrie all bundled up.  She stayed nice and warm and happy.

Sadie my dalmation puppy  (she's actually awake!)

Love the puppy butt!