stronger

 I have been listening to the Message channel on my Sirius radio.  Now, I also listen to the 90's and country channels, too, but have found myself listening to this channel a lot more and really listening to the words and how they pertain to me.  I heard this song not long after we found out about Chandler's conditions when I was pregnant and thought "this song is for me!"  Well, I heard it again the other day and thought the same thing!  How fitting are the words?!?  The Lord is trying to tell me something, I just know it!

The song is "Stronger" by Mandisa and if you get a minute, pull it up on u tube and see if you don't think that the lyrics are appropriate for me and Kris....

Hey, heard you were up all night
Thinking about how your world ain't right
And you wonder if things will ever get better
And you're asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather

Oh, don't hang your head
It's gonna end
God's right there
Even if it's hard to see Him
I promise you that He still cares

[Chorus]
When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain't gonna last forever
And things can only get better
Believe me
This is gonna make you stronger
Gonna make you stronger, stronger, stronger
Believe me, this is gonna make you Stronger

Try and do the best you can

Hold on and let Him hold your hand
And go on and fall into the arms of Jesus
Oh, lift your head it's gonna end
God's right there
Even when you just can't feel Him
I promise you that He still cares

[Chorus]

'Cause if He started this work in your life
He will be faithful to complete it
If only you believe it
He knows how much it hurts
And I'm sure that He's gonna help you get through this

When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain't gonna last forever
In time it's gonna get better
Believe me
This is gonna make you stronger

four month pic taken by the talented Amanda Smith

 

 http://www.reflectionsphotographybyAmandaSmith.com

trying desperately to be stronger,

Megan

loooong week

THIS. IS. THE. LONGEST. WEEK. EVERRRRRR!!!!!

Of course time has been flying right on by up until yesterday!!  And I will be working this week so that I wouldn't be at home staring at Chandler and the clock!  Now the nights are a different story..as I was washing dishes at 8:30 last night and Kris was taking the garbage out, I said to him, "I don't know how parents do it when they work until 5:00 or 5:30 or be a single parent."  And that is the truth..I have no idea how they do it, but I give them credit cause I know it's tough.  Just when I think it's craziness in our house, I think about those people and make it through.  Of course, I need to first learn how not to want to be supermom!  Haha good luck with that :)

Last night I slept with two of Chandler's blankets..I know it may sound silly, but someone had said that they slept with their child's blankie before surgery, so I thought I would too.  Anything to help make her feel more relaxed and "at home" I am willing to do.  (It also makes me feel a little better, too!)  I have started packing a few things and that makes it feel so real!  And how to pack for big sissy?!?  She will need a separate suitcase for all of her bows and shoes haha!  Which makes me very sad, by the way.  Along with worrying about Chandler being in pain after surgery, I have been worrying about Madeline and being away from her.  This is so hard for me, because I want to be there for both of my girls, and how do I decide what's right?!?  So as of now, I will be there with Chandler and hopefully grandparents will be able to bring Madeline to visit us.  It is going to be a rough week but "this too shall pass."  We are very excited to see how well Chandler will feel after surgery and that is what is getting us through all of this other stuff.  On a happier note, her little personality is really shining through and she is a ham!!  She gets so tickled that she doubles over and her eyes sparkle..it is really sweet!  She already admires her big sissy who is VERY protective of her!  Madeline makes sure we tend to her and don't forget her..if she thinks that we aren't being fast enough, she runs over to Chandler and says, "Shhhh, sissy's here, it's otay!!"  Chandler is doing MUCH better with her head control and is just about to roll over.  She is constantly kicking and moving, in fact, when we put her on the floor, she moves herself off of the pallet!!  We are certainly in for it when she has recovered!  We were spoiled with Madeline and her little calm and easy self..Miss Thang is going to give us a run for our money, we can already tell!!

the play mat is a car...so Madeline said "I driving Chandler to the doctor!"  poor thing that's the only place she gets to go, but not for long!!!

sisterly love

cooking in mama and shimmy's OLD kitchen..we won't say how old! ha

sleeping angel

Please continue to pray for us as FRIDAY gets closer...pray for the guidance and knowledge of the surgeons, pray for Chandler and that she won't be too anxious and won't experience too much pain, pray for me and Kris and that we won't be too anxious either and that the time will pass quickly and that we won't be worried about Madeline..those are the specific requests that I can think of now, but any and all prayers are greatly appreciated!!

Today is a very special day....it is Shimmy's 30th birthday!!  We wish her a wonderful day and love her very much!!

HAPPY BIRTHDAY SHIMMY!

ready for Friday to come and go,
Megan

pre-op appointment

Chandler weighs 11.8 now!! She had an EKG and chest X-ray done today and blood work. I only cried just a little cause miss thang did enough for both of us! She was mad at those nice ladies! But we all survived..whew! Then we talked with a cardiac nurse practitioner and met Dr. DiBardino who will perform the surgery along with Dr. Salazar. He was VERY informative and detailed. He said that there is a 10% chance that she will require another surgery in six months. The echo doesn't show any signs of another surgery; however, they really won't know until they get in there and look with their eyes. If they can't fully repair it, they will put a band around it then fix in six months. Either way..band or full repair, Chandler will feel better and will be able to feed without fatigue!!! What?!? We won't know what to do when she can eat "normally!!" He said to be prepared to be away from her at least five hours or more.. Of course Kris's response was "take your time!!" And I agree! He also said she will begin to heal while in the hospital, we just have to watch the incision and make sure it doesn't get infected. We then met the nurse coordinator and she answered any questions we had and took us to anesthesiology which is where we will start on surgery day. They told us we couldn't feed her formula after midnight before surgery but we can give her clear liquids such as pedialyte or nursery water until 4:00 a.m. I know Chandler will be glad of that!! I was beginning to wonder how we were going to pacify her!! So surgery is a go for next Friday the 1st..

After all was said and done, Kris and I left with a peace and agreed we are ready for this time next Friday!!!

Until next time,
Megan

cry a little

A good friend of mine had suggested that I have a really good cry and that would help relieve some of my stress. Well today was the day that I had that cry..you know the ugly, snot slinging cry?!? That's the cry I had today.. Not the "pretty" cry, if there is such a thing! Ha I keep asking the same questions, "How am I supposed to hand my baby over to strangers and trust that they will take care of her and bring her back to us?" "How is this going to affect Madeline?" "How am I going to get through this?" The only answer that I keep getting is God.. I know that He will get me/us through this but it won't be easy..

Chandler's surgery date has been changed to Friday, February 1st... NEXT FRIDAY!!! We go for our pre op appointment this Friday where we will see the nurse practitioner, anesthesiologist, have an echo and EKG done and blood work. They have already told us to be there at 6:00 a.m. on surgery day and for her not to have anything to eat after midnight.. Uh ok can you explain to our four month old that no Chandler even though you are starving, you can't eat!! Miss thang is not going to be happy; however, we will get through that, too!

A part of me is ready for it to be all over with so we can put our eyes on our special girl and another part of me wants to hide her away so they can't touch her. All the doctors have assured us that everything will be fine but it is still so hard.. I am going to TRY to put my big girl panties on but please keep praying for all of us as it gets closer and closer.. I am going to be honest and say that I am scared to death but being surrounded by our wonderful support system of family, friends and even strangers is an amazing feeling.. I am reminded on a daily basis just how blessed we are when someone sends a sweet text, sends a note or card, calls or just tells us they are thinking about us and praying for our Chandler.. These "little" things always put a smile on my face and bring tears..tears of joy and love.

waiting impatiently,
Megan

big girls

WOW!!!  What a wild and crazy week, but we made it to Friday with the promise of a long weekend!!  I won't bore you with specifics because then it would sound as if I am whining...which may be partly true ;)  We all deserve to act like a two-year-old every now and then, right?!  Anyway, my sweet Daddy has been sick this week, so he was unable to do his "Papa J duties" and help keep Chandler, which he was very upset about and so was she.  Nana was able to save the day, though, and we are grateful, especially for the clean house and clean laundry..I know I am very lucky/blessed to have a wonderful mother-in-law!  We are also very thankful that Kris has a good job; however, it is tough being a "single" parent at times, but we will get through this too!

Chandler has been doing very well with her "homework."  She is able to hold her head up for longer periods of time, but DESPISES tummy time!  I have met so many new mommy "friends" who have children with Down syndrome through other friends, Facebook, and/or blogs.  These people have become instant friends because of our children and I can't tell you how comforting it is to know these parents, but not really knowing them.  If that makes any sense!  It is like an instant connection and I feel like I could talk for hours, but I try to refrain from bombarding them with tons of questions and talking about my feelings :)  Everyone we have met, talked to, or messaged has been super nice and uplifting.  It is amazing that I feel as if I have known these mothers forever, and how a stranger's words can be so comforting..  For instance, one mother of a six-month-old daughter who had her heart surgery at four months said that we will find our baby to be totally different, but for the better because she will feel soooo much better!!  Talk about reassuring and positive..I can handle that kind of different!

notice big girl holding her bottle!!  she doesn't hold it for long, but holding is holding!!

 Now of course I can't go without talking about sassy Madeline!  On the way to eat last Saturday night, she was saying something that Kris and I couldn't understand. So finally I said what are you talking about?  And her reply was.."Listen, she doesn't have her kkkkk, s o c K."  Kris said yep her mama is a speech therapist.  haha  Oh well, at least she listens (sometimes).  EVERY SINGLE DAY we are reminded that her birthday is coming up and she is going to have a Cinderella birthday.  Now, if she changes her mind between now and March, that is just too bad cause Cinderella it will be!  She also tells everyone "I have a baby sister."  Her innocence and sweetness for her sister is sometimes too much.. The other night, all four of us were in the playroom and I showed Kris a picture of a baby of one of my new found friends who is just a little older than Chandler.  Madeline looked over my shoulder and very sweetly said, "dat looks just like Chandler..she's toot!"  Her Daddy and I both had tears in our eyes because what she usually says is "that's Chandler."  God picked her to be Chandler's big sister and our first daughter for a reason and we see the reasons on a daily basis...I say it all the time but we truly are blessed and God has been so good to us and continues to be..

Brittney brought her a cookie..green lips!

 Hope everyone has a wonderful weekend..we are so excited to see the sun and hopefully Madeline will get to ride her Barbie "tar."  I will be staying with Shimmy Monday night because I have a conference on the coast Tuesday so Kris will have the girls overnight by himself for the first time since Chandler was born.  They will be fine, there isn't a doubt in my mind!!!

sweet sisters

 Also, please continue to pray for Chandler (and us) as the 31st gets closer..I am starting to feel suffocated and that the walls are closing in.  Ready for it all to be over with!!  And please pray for these other families whom we have met who have been through the same experience or will go through it too.

until next time,
Megan

rainy days

Since we have been doing our "homework" Chandler has really been holding her head up much better! She loves to look at her big sissy so we get Madeline to run around so she can follow her. Miss priss just loves being a "helper!!" It is so funny how different our two girls are.. As Kris says, Madeline looks like her Mama but acts like her Daddy and Chandler looks like her Daddy but acts like her Mama. Madeline likes to play by herself and doesn't like to be pestered but Chandler wants someone around her, entertaining her at all times.. Hmmm not sure I like his comparison!! Haha

Madeline says funny stuff all the time and it I hard to remember them all but here are a few new ones:
One day I yelled (not at anyone, just yelled..y'all know what I am talking about!!) and I cried saying I am sorry Mama lost her temper. Madeline said "I will help you find it!!"
She saw our wedding picture so we talked about Mama and Daddy got married and we were the bride and groom. So Madeline says "can I wear your dress and be married." I said "sure who will be your groom?" Her reply "Daddy can be my broom!!"
Shimmy's dog's name is Dino and Madeline loves him as much as he loves her! I was loving on her one night and said "I am rocking my little bambino" and she said "I not Dino!!"
She is a mess but full of laughs and lots of fun!! Still can't believe she is turning three in March! *tear*

Looks like it's going to be another wet weekend that will be enjoyed indoors snuggling with two sweet Smith girls!!

until next time,
Megan

updates

January 31st....is staring us in the face!  Surgery used to be when "the baby" is four to six months old, then when Chandler was four to six months old, then January 31st, but now it is THE 31st!!!  As in THIS MONTH!!!  We have been talking about this surgery since June, but now that it is here, it takes my breath away.  We went to see Dr. Parnell on Friday with a page full of questions.  She answered them all and never treated me like a neurotic mama, even though I felt/feel like one!!  She also increased her medicines to .05 mL for each dose and no more weight checks..HALLELUJAH!!!!  Every time we went in the Children's Clinic, I just felt like the germs were jumping on us but we do what we gotta do!

Anyway, here are some of our questions and her answers:

• How long will surgery last?  Surgery will only last about one hour total but with prep work, surgery, and recovery, we should be prepared to not see her for about five hours..whoa!!
• After surgery, while she is in the NICU, we will be allowed to see her every hour until she is off the ventilator.  They don't want to take her off the vent too soon and then have to put her back on it, and neither do we!!  Babies with Down syndrome tend to fight the tube, so they think they are ready to breathe on their own, only to be taken off and be sluggish, non responsive and be put back on.  Estimated time on the vent is roughly two days, could be sooner, could be longer.  Once off of it, she will be transferred to a regular room where we can stay with her..yay!!
• As far as high calorie formula after surgery...  There is no need to keep her on it; however, we will have to gradually go back to regular formula since they taste different.  Chandler will probably be happy with that!!
• Will this surgery take our happy baby away?!?!  She will be grumpy for about a week and then she will be back to herself..thank goodness!
• How long for full recovery?  About four weeks..which includes hospital stay, post-op visits and extra TLC :)  Since we trust our daycare and they are not "afraid" to keep her, she will probably start going then.  Which is a wonderful thing..this OCD mama is ready for a better routine!!  I know, I know, wishful thinking about a schedule with two children, but one can dream, right?!
• Will she have to stay on meds?  Yes, for a short time after surgery and then she will gradually lower the dosage until she will no longer take any medications!!
• Possibility of other surgeries?  They will know more once they do this surgery to determine if others will be needed, but as of now she is optimistic that this will be the only surgery she will need!
• What about big sister coming for a visit?  She recommended letting her come later in the week and suggested that Child Life talk with her before she sees her.  They will explain things in a childlike way and have Chandler all covered up so that she doesn't see anything.  This part is very emotional for me...leaving my big girl, who doesn't understand what is going on, for a whole week..eeek!!  So, some wonderful family members and friends have offered to bring her for short visits to see me and her Daddy but maybe not to see Chandler.  She is so sensitive and emotional too, that it might just freak her out...
• Speaking of freaking out...she warned us that Chandler would not look like herself and would have lots of tubes coming out of her little body..let's hope that her Daddy can keep it together and not pass out and her Mama, for that matter!!  But it will be hard..

We will not be back to see Dr. Parnell again, but she assured us she would make a special trip to see us on surgery day..even though she won't be making rounds that particular day.  It makes us feel so good that she cares so much!!  They will be calling to set up a pre-op appointment soon.

In the meantime, she was granted Medicaid for institutional level of care.  A kick in my stomach, but she now has health care and that is all that matters, no matter what the label is.

Regarding Early Intervention...I did the interview back in December.  I have to say it was tough and I cried a little afterwards, only because I was in the "parent" chair and not the "professional" chair.  She did a developmental history, and it was almost identical to the one that we go over with our parents.  Just a different feeling being on the other side.  Anyway, the evaluation was yesterday..as Kris said, "how in the world will they test a three month old?!?"  But the evaluator asked me alot of the questions since our sweet girl was napping..he has obviously been told you never wake a sleeping baby!!  haha  He assessed the following areas:  social, language, fine motor skills, gross motor skills, cognition, and self-help.  For those of you who don't know, they will compare her chronological age to her functional age to see if there is a delay or not.  Now, she was not delayed in the areas of social :), language or self-help, but she was delayed in fine and gross motor skills and cognition which is basically mental processes (attention, memory, producing and understanding language)..so again how can you assess an almost four month old's cognitive ability?!?  There are some things that she should be doing at this age, but she is not; however, you can bet we will be doing our homework though!  For her motor skills, he said to lay her on a hard surface, either on her back or tummy..she will love that ha, and make her follow objects with her head, not her eyes. When she is sitting in our laps, we shouldn't give her alot of neck support, to let her "sit" on her own and hold her head up.  Our ultimate goal is to strengthen her neck so that she has better head control, so that she will be able to push up, sit up, crawl, and then walk.  He also said to have her hold things in her hands for longer periods of time and encourage her to reach for them.  Now, motor has been an area that I have been concerned about, but when we were finished and she had woken up, he asked to hold her and meet her.  He said, "she has good head control, you didn't give her enough credit!!"  WOW...That made this Mama very proud!!!  She will receive services on a weekly basis, but they won't start until after her surgery at Lisa's.

Enough about little sissy, let's talk about big sissy!!  She continues to amaze us on a daily basis and I can promise I don't drill her, she is soaking it all up and is constantly saying "read for me!"  We LOVE LOVE LOVE our books!!!  She is listening even when we think she isn't!  She does "school" every morning at daycare and they say the Pledge of Allegiance..our almost three year old can say the Pledge!!!  Her words aren't all right but you know what she is saying and it is too cute!  She is also recognizing letters "M is for Madeline, Mama and Marley, D is for Daddy, S is for Shimmy" and she knows other letters too!!  Her Daddy and I are very proud of her, well, our whole family is proud of her!!!

Speaking of our family, today is Mr. Randy's birthday (AKA "Pops") so we have been practicing singing Happy Birthday to him.  Madeline cannot wait to call him today and sing to him, then on the weekend we will have birthday take..she wanted him to have a princess cake but she compromised with a tractor or a truck!  But I can assure you, he wouldn't care if he did have Cinderella on his birthday cake!!  haha  He is doing exceptionally well and has gone back to work a couple of hours a day.  Now if he would just follow the rules Nana wouldn't be so stressed..you know how men can be! ha

January is a full and busy month, but the last day is constantly in the back of our minds!  Please continue to pray for our sweet girl, us and all of our family, and the surgeons..God has been with us this entire time and I know He won't let us down now!

until next time,
Megan

Some pictures from Christmas...

3rd Christmas

1st Christmas

twas the night before Christmas...

she never goes anywhere without "baby doll"

she misses all the fun stuff

Can you guess what Daddy got from Grammy and Papa J haha...something to work with!!

Santa brought her markers and she says "can you market with me?"

Shimmy and Madeline playing Candyland

this is JUST the girls' gifts!!  so blessed or spoiled, whichever way you look at it! :)

Merry Christmas from the Smiths

a little rain and cold weather can't keep a girl out of her new car...notice who is in the passenger seat! haha

happy new year!!

It is officially 2013 and we are looking forward to what it brings us! As the 31st is staring us in the eyes, we are optimistic and are just ready for it to be over with already!! We go on the fourth to meet the surgeon and have some questions. With tears in my eyes, I tried explaining to Madeline that sister was having her bobo on her heart fixed..wow how on earth can you explain that?!? I did the best I could and she seemed to be ok with it. Now, when she sees Chandler's chest for the first time, that may be a different story..

I have thoroughly enjoyed my time off with them and will honestly be sad to go back to work.. Never seems like enough time off and I know the weeks will fly right on by..

Madeline is still talking about Santa and keeps saying he is here and let's look for reindeer..oh the innocence of a child! She has been lots of fun and is constantly saying funny stuff. And I think we (I) have watched cinderella 50 times since Christmas!!! Not kidding.. And this is a kid who used to care nothing about tv until she found out about this princess! She has also been experiencing a wee bit of jealousy but it is kinda sweet!!

Hope 2013 brings good things, especially for our little family.. I have a feeling it is going to be our best year yet!!

Chandler laughed out loud for the first time last night and it really is the sweetest sound! Well both of their laughs are pretty sweet to us!

until next time,
Megan