Chonicles of a one year old driver

Yes, I am cool...and yes ladies, I am single!
Gotta go, you can't hold me down now that I have wheels! I am free to experience all that my little red car has to offer...I want to let the wind blow through my hair!
Wait a minute...I forgot Daddy buzzed my head...and now the wind can't blow through my hair!


*In case you notice the bruise on Dane's forhead, he tripped and caught the corner of our paper shredder! Poor guy, but he barely cried...because he is one tough kid!

Developmental Evaluation #3

Sorry I have done such a cruddy job of posting, these are my excuses: our Internet has been going crazy, I think that we have been off line more than on line the past couple of weeks, and we have been getting ready for back to school for Gage and Katie. Katie started school today and Gage starts tomorrow. I will miss my helpers, especially Katie, they have been a big help around the house and with entertaining Dane.

Today was Dane's third developmental evaluation with Phoenix Children's Hospital, I really like getting feed back from the therapists there...the majority of kids they see are former preemies, so they really understand the development of these little miracle kids. Well, besides her immediate response to how huge Dane is (she said that we should do a study on him, he is the biggest preemie she has seen!) she was amazed with his progress. She put him through lots of little tests and then scored him in all of his developmental areas. They go off of his adjusted age of 14 1/2 months, and his lowest score was 15 months! The majority of his scores were at 17-19 months!!! AMAZING!!! Thank you Jesus!!! She was impressed with his sign language, and how he stacked blocks like a pro, he also went up and down the therapy stairs while only holding on with one hand...very fancy stuff! She wasn't that concerned with his wobbliness (I think that I just made that word up), because he has only been walking for two months. She feels that we can back off a little on his PT too, so I think that we may go to twice a month on that. We celebrated his awesome report card with an iced americano and some apple juice...not mixed together of course!
I felt an overwhelming urge to praise God as we left Phoenix Children's...so I put on a CD and sang worship songs very loudly and yes, very out to tune...but I know that God has ears to only hear my heart...to which we are both thankful! It is truly a miracle to watch how Dane has been healed. I am not in denial to what problems may lie ahead for our journey, but I trust in God's plan and know that any future heart ache will only draw us closer to Him.

BTW, his hair is growing out and I think that it looks much better and I am no longer angured with Chad when I see his little head!

Pictures to come soon!

"You, did NOT buzz his head!"

"It's okay, I still look cool Mom!"

Where did Dane go???
"Here I am!"
"YOU DID NOT BUZZ HIS HEAD!!!"

The reply from my dear husband was "yes". I came home from work to see a toddling Dane come around the corner with a silhouette of an egg head that I was so desperately trying to hide with his hair. Yes, Dane did need a trim as the dreaded mullet was starting to appear. I have been ever so slightly trimming his baby hairs for the past six months, and Chad has been teasing me that he was going to buzz him, which I kept saying "you had better not TOUCH his hair". Due to his prematurity he does have a skinny head, the NICU nurses call it a "toaster head" and say that they can spot a grown preemie by the shape of their head! I was trying to grow it out a bit to off set the shape of his head...which I must add is not that bad, the nurses did a great job of turning Dane every couple hours while he was in the hospital to keep the "toaster head" to a minimum. So okay Mom's, I know you can sympathize with me here...yes, he is still adorable and yes, it will grow back...but girls...I was soooo mad at my husband!!! Needless to say I am quite sure that Chad will not go near Dane's head again with anything sharp!

Otherwise, Dane is doing good. We are working on trying to strengthen his core to help him with balance, he is still falling a little more than he should. We are basically doing a Pilate's move on him, his stomach and neck muscles are a little weak and he has compensated with VERY strong shoulder muscles. We are also working on behavior, as he thinks that if we tell him "no", he should try to bite or pinch me. I know that it is out of frustration as he can't communicate with us they way that he wants to. The funny thing is that he only does this to Katie and me...never once does he try to bite Chad or Gage. It also doesn't matter who tells him "no", if Chad tells him know...he tries to pinch me, if I tell him "no" he tries to pinch me. Let me tell you, he has some strong pincher's!!! So, for now we are just removing him from the situation when he starts to do this...time will tell what we try next. He is very strong willed and stubborn, which was a necessity in the NICU...but a bit of a challenge as he gains Independence! We love him though, and we try to remember that it was his rebellious nature that helped him get him where he is today!

Happy 4th of July (on the 3rd!!!)

This is what Dane does when you ask him "who's so cute?" or "who's so smart?" Too cute, he always proudly raises his hand!

I know that I won't have time to post tomorrow, so I thought that I would do it today! I hope that everyone has a wonderful day tomorrow full of lots of family, friends, food, and fireworks.

Beware, hot topic ahead...and it doesn't have one thing to do with Dane or prematurity!

We will be going to a church party/baptism at an unbelievably generous persons home that has offered their gorgeous home to our church family for the evening. This house is awesome, the pool has a lazy river and a buried treasure ship in the shallow end! Gage, Katie and myself have made the decision to be baptised also. Baptism itself has raised a lot of questions for me, since I became a follower of Christ I am very skeptical and aware of trying to stay clear of any legalism in my relationship with God. When I read the gospel what resonates in my heart is that we are to be baptised in the Holy Spirit and if you are not careful, water baptism can feel like another notch on your Christian belt. It is something that I have decided to do as an outward symbol of the internal change that I have had in my life, not as a legalistic, religious thing that somehow makes me more Christ like. There has been an odd stigma that I have found is attached to not being baptised in the church, there are brothers and sisters in Christ that have acted shocked and said "YOU have not been baptised!" and I think that it is for that reason that I haven't done it yet, when people act like that it changes the experience for the person being baptised it makes it about everything that Christ preached against. It's like when you see people take communion, and they really have no idea why they are doing, just another "to do" thing on their God check list, and like taking communion, baptism needs to come from the heart, a decision that is between you and God alone, and I might add a decision that is for God alone to judge. Anyone can get dunked by their Pastor, but it takes a secure relationship with Jesus to search yourself for the real reason you are doing it. I am glad that I have had the opportunity to really pray about it the past couple of weeks, and thankful that I have had the chance to share my heart with people about why I hesitated to do it. I am proud of my kids for making the decision to be baptised tomorrow and I pray that it is truly is a life changing experience for them. I pray that they are not doing it because it is what man expects them to do, but what God wants them to do to show and share with others their faith in Jesus... and that they know it doesn't make them any less or more loved by God...He sees and knows our hearts, whether we have been submerged in water or not. Google "different thoughts about baptism in Christianity" and you be amazed at the discussions out there on this topic. I am glad that I have decided to share this experience with my kids, heart and eyes wide open knowing that there is not any legalistic reason attached to this public symbol of my new identity in Christ. Just as a side note, my Mom baptised me when I was a baby and I think that is awesome, you know why? There is not ANY legalism attached to a Mother baptising her baby with no one else around but the Lord...so thank you MOM!

Oh yeah, make sure in the midst of your 4th of July celebration that you pray for our country, and it's leaders, our soldiers, and their families!!!

Okay, back to Dane, he is doing great! Getting more and more stable on his feet and though he may not be hitting every milestone on time, he shows improvement everyday. We have been taking him swimming, which he loves a little too much...he has ZERO fear of the water! He is my happy guy and our family is blessed by his big brown eyes!

Today is the first day that I have actually felt a lot better, I can have conversation with out my lungs burning. The way I figure it Dane is about 4 days behind me in this flu/chest cold thing. He still has a very nasty cough, but his lungs were clear when we took him to the doctors. (BTW, he weighs 25.5lbs!!!) He is back on breathing treatments, mostly for preventative reasons. He is a much better trooper than I, you barely know he is sick except at night when he tries to cough up all the junk in his chest. We are praying that it doesn't turn into anything worse.

When he is sick or very tired it really effects his motor skill, so he has been falling a lot...which he has actually gotten very good at. He does get frustrated because his body won't do what he wants it to do. Now that he has been walking for two weeks, we have noticed that his right foot is turned out and his right leg is a bit stiff. So, we will keep our eye on that to see if may need a little help with it. We are so proud of him!

The never ending night

Well, I did it...I gave Dane my cooties. He started coughing pretty hard yesterday and I just knew that it wasn't going to be a fun night. He woke up crying and coughing after 15 minutes of sleep, when I went to pick him up he promptly vomited all over me. Now, I am not complaining, we have been so blessed that we haven't had any of the preemie eating, gagging, and vomiting issues. For so many preemies and their families vomiting is a part of the daily routine. I think that Dane must have steel guts, he eats and poops like champ...and has done so since he was in the NICU. With that said, curdled milk and half digested dinner down the INSIDE of your shirt is not cool. He was feeling better, but it took what felt like forever to get him back to sleep. I thought that I would share this cute picture so not to leave you with the mental picture I just created for you above. Then Gage came home from work to this, you guessed it folks, we have a revenge T.P.'ing at it's best. Yes, it sucked that he had to come home from work and clean this up, but the reality of war is not pretty. One of his best friend's that was involved in the initial attack that lead up to this revenge attack came over and helped clean up...there is one thing for sure, the bar has been raised and if I know my boy he will rise to the occasion. So the war will continue, consider yourself warned. Jade, Krystal and Allison!!! :) Gage has a job and plenty of money to buy loads and loads of toilet paper! This was written on the drive way, a cowardly move for sure! I personally think that this Bobby character has made himself a target fair and square...no pun intended of course.
Okay, getting back to Dane, he woke up with a fever and in need of a breathing treatment at around 3:00am. He seems to be a little better this morning but we are taking him to the doctors to be safe, though he has steel guts...his lungs are still a little lacking.

Hopefully, we will all rest well tonight!

Happy Fathers Day

This has nothing to do with Fathers Day...just a funny picture of my personal choir! Gage came home with these from work the other day because they were going to throw them out, but we managed to entertain ourselves for at least 20 minutes with these beautiful red and hot pink choir gowns!

A special Happy Fathers Day goes out to my Dad and my husband, the two guys in my life that I know no matter what happens will always be there for me!

I had to work this morning, and I have been fighting a bit of a yucky chest cold that has turned into what is looking like the flu, but it was a great day still. We went to church, then napped, and I made chicken pot pie to take to my Mom and Dads.

Dane is walking up a storm, though his walk does resemble a zombie that has had a couple cocktails! What a great gift for fathers day, to see our little man toddling around!

He is still doing great with his communication, his new thing is what I call "babbling in sign language". He will start doing things with his hands, I know he is trying to sign something but I have no idea what! I know that he is soaking up all the signing that I am teaching him and the signing videos too, so I guess it's just like the babbling he does in reaction to all the talking he hears around him...just with his hands! It's very cute none the less.

NEWS ALERT!!!

Sorry about the quality of this video, it was taken with my digital camera...anyway...Dane has been taking three or four steps on his own for the past week or so, but today we had some friends over and when they went to leave he walked from our kitchen to the front door to follow them out! We grabbed the camera and did a reenactment by dangling my cell phone in front of him! We are so proud of him!

We thank God for his continued healing of our sweet miracle!

The eyebrow

So, for those of you in our family...well at least my Mom's (Grandma Kathy) side of the family, there is the famous "eyebrow". My Mom can raise her eyebrow at you like no other, my brothers David and Mark also have "the eyebrow", it's been kinda a joke in our family as long as I can remember. Katie snapped this picture of Dane, and you can see for your self that the legacy of "the eyebrow" will live on for another generation! Though it's not raised nearly as high as my Mom can raise hers, not too shabby for a one year old. For those of you that don't care about our family eyebrow raising...it's still a funny picture!

You may have heard me say this before, but....This little boy amazes me! We were at the grocery store when he started making quite the scene over a picture of a baby in a magazine. So, once again, we showed him the sign for baby...which is folding your arms as if you were holding a baby and rocking. Well it finally clicked with him and he is now a "baby" signing fool. As you can see from the video, he shakes his head "no" when I keep asking him to sign "duck" (which he knows how to do)...but if you listen closely you can clearly hear him say duck. He has grown leaps and bounds in the past two weeks with his speech. He is clearly starting to mimic what we say to him. It is soooo exciting and one of the many "Thank you Lord" moments as we get to watch this miracle unfold right in our very own little house!

He is still very, very close to walking and has started taking one or two steps consistently between furniture with out holding on. He is extremely stubborn, and refuses to practice walking unless it is his idea and not ours! He is currently tempting his boundaries on behavior, which we are doing the best we can in being consistent...though it is very hard to keep a straight face when he is being a stinker! He already broke the first set of baby locks on our cabinets, and Chad just installed the new ones...hopefully they will last longer than the first ones! He favorite thing is taking everything out of the pantry, and when we ask him "who make this big mess?", he proudly raises his hand! We are baby sitting my Moms dog, and has been saying her name, Molly, like a pro...well at least he says "olley"...good enough for me~

We celebrated his "adjusted age" birthday party last weekend. We had his dedication at church, which was a tear jerker for me, then we had family and close friends over for some cake. Dane did great at the party, and let everyone hold and play with him. It was a great day, I only wish that we had the finances and the space to have invited more people to share in the celebration! I better go, I can hear Chad scolding Dane for getting into the garbage...he is worse than a dog when it comes to getting into the garbage!

We are really working on signing please and thank you, but as you can see from the video or if you have ever been around Chad and I, you know that we both seem to talk at the same time...so the fact that Dane can hold two conversations with us at once makes him a double genius!!!

Make photo slide shows at www.OneTrueMedia.com

New goals

"Good grief Mom, enough with the camera!"
"Okay, I'll smile for this picture...but only because it's Mothers Day"

Every six months the DDD comes out and we talk about how Dane is doing and set new goals for him for the next six months. I was so proud that he had mastered all of his goals that were set for him six months ago, like getting himself into a sitting position, crawling and more babbling. He has kicked some serious preemie butt in all of those goals...so now we move on to new goals. Of course walking is a major goal for the next six months, but the big one is speech. Speech is the area that he is the most delayed in, he does a lot of pointing and grunting to communicate with us. We encourage him to sign to us, which he has been doing awesome with...he is pretty consistently signing "more", "drink", and "all done". There are times that he refuses to sign, but we take his hands and do the signs for him before he gets what he wants. We want him to start mimicking our speech with in the next six months...that is the biggie right now. He seems to have a bit of an ornery side to him, but for now we treat him like we would any other child when he acts up. Time out in his play pen and stuff like that, it's just so hard to tell what is a behavior issues VS. disabilities. I personally think that he is a smarty pants with an attitude!

Today, we had him strapped into his toddler rocking chair to watch a video while Chad and I worked on a spread sheet for his business. Next thing we hear "THUMP", we look over and there goes Dane crawling across the floor with the chair still attached to him! He couldn't see where he was going because he couldn't look up, ya know these things are hard when you have a rocking chair strapped to your back...we heard him swinging his legs but we had no idea that he was doing it with the intention of rocking himself completely forward! He looked like a hostage victim trying to get to away while still tied up! He took off crawling until he hit the wall! There is no one that can tell me that this child is not a genius...or at least an escape artist!

We are going to try to get a video of him doing it, it was the funniest thing that I had seen in long time!

I know, he looks like an angel in the pictures above...but trust me, there is something behind those eyes that is full of mischief!

It's over!

RSV season that is! Yippee! We made it successfully through Dane's first RSV season (out of the hospital that is) with out catching the nasty virus. It really wasn't too bad being stuck at home and well worth the health of his lungs. He has been to the grocery store a couple of times this week, and we may even attempt a play date this week with my sister Chick's! There is a whole new world out there and I am excited to take him to the Mall too, I am sure way more excited than him but that's okay. Gage and Katie were at the Mall with in days of being born!

We are still very aware of his lung disease though, every time he starts to play hard and crawl very fast he starts wheezing and coughing. Last night we had to give him a breathing treatment (the first in over three months) because he was wheezing so bad. You see this child does not want to get dressed and especially doesn't want us to put his diaper on. After his bath he exerts sooooo much energy fighting us to put his clothes on he starts wheezing. The doctor said that he will definitely have asthma and that it would most likely be pretty severe...but hey the doctors have said many other things too, right? Hopefully we can keep him healthy and he will out grow any asthma, but it not no biggy.

Thank you team "Great Dane"!!!

Here is our team Captain!

This is the back of our t-shirts...we wanted to give everyone our definition of what a "Great Dane" is! Our team started to assemble, we had to get our Starbucks first though...it was worth being a little late!

Tonya & Jenn, my fellow Starbuckians! (I love that I got Team John in the background!!!)
Dane after the walk, he was VERY happy to be out of his stroller!
The fam...
Team photo...minus my brother Mark and sister in law Sandra, today was their anniversary so they left early to be schmoopy with each other! Happy Anniversary guys!
We raised a total of $3,210!!! Thank you all so much for donating, the generosity of my friends and family amazes me. You know what else amazes me? The wonderful team of walkers that got up very early on a Saturday morning to walk to raise money and awareness of prematurity. My poor Mom couldn't be there, she got the nasty flu bug early in the morning...we missed you Mom! Shera also just got out of the hospital after suffering a scarey migrain and couldn't make it, so we missed you too Shera!

Besides the love of family and friends the other great part of the walk was that I got to meet John's Mommy, I have been following his blog since Dane came home from the hospital. Her blog was one of the first one's that I found, I was instantly taken back by her love for little man who also fights hard everyday to over come his prematurity. John was a 24 weeker and has over come so much! John's link is on my page if you want to pop in and show his blog some love.

I also met Tiffany, Mommy to preemie triplets...yikes! One of her triplets also had a grade IV brain bleed and is doing really well. I would have loved to stay and chat with the other NICU Momma's but kids were growing tired and needed naps.

Of course PETA was there to protest and hand out copies of a dime with blood spilled on it...nice huh? They are upset that March of Dimes does has funded testing and some of that testing has been on animals. I am sorry but a bunch of 19 year old PETA activists just aren't going to persuade me to not support this cause. SO THERE PETA!!!

So, to our team captain...the "Great Dane":

We love you and we can't imagine our family with out you, we did all this in celebration of your life!!!

Dane's Amazing Journey

Please enjoy this video of Dane's amazing journey...

This is why we are raising money for the March of Dimes. The walk is in two weeks, please consider a small donation to help us raise money for a cause that has touched our family so deeply.

Photo and video editing at www.OneTrueMedia.com

Warning...

One weeks of blogging done in one sitting!

Sahuaro Ranch Park

For those of you who don't know about this hidden gem of a park in the west valley...you need to go visit and do it soon before it gets too hot! http://www.photography.inkart.net/arizona/sahuaro_ranch/ I have been visiting this park for as long as I can remember, Chad and I used to hang out there when we were in high school, we enjoyed countless visits there with Gage and Katie when they were younger...and it was so awesome...yet surprising to me that here I was taking another kiddo to go visit the peacocks at Saguaro Ranch Park!
We were greeted by dozens of squawking roosters and the most beautiful aroma of orange blossoms when we pulled in the parking lot. The rose garden is in full bloom and we enjoyed looking at the huge variety of roses...they had every kind you could dream of, the roses alone are worth the visit! We meandered through the grounds to find all the peacocks hiding in the orange groves as well as a couple of very well fed bunnies! We were armed with a loaf of bread and had a ton of fun feeding all of the birds and rabbits.
The back side of the park is a more traditional park with playgrounds, soccer fields, and the "usual" stuff...just on a huge scale. This was the first time that Dane got to be on a swing...and he had a blast! He smiled and giggled the entire time, the higher we pushed him the better! Our little dare devil!

He took a three hour nap when we got home!

Getting so brave!

We have had a couple kitties visiting our back yard and Dane gets very excited when they show up.

Dane is doing a great job standing and is mostly standing on his own...though if he figures out that he is doing it by himself he gets freaked out and falls. He is confidently cruising between couch and coffee table, he is even walking along the walls! It will not be long before he takes off! He really is a miracle!

New pictures!

We took Dane to church on Easter, he did great and fell fast asleep in Tracy's arms! (thanks Tracy!)
In case you haven't seen the way our boy sucks his fingers...Gage and Katie think its cool that he does the "rock on" sign!
It was nice to see our three kiddos huddled together on Easter night! Dane LOVES his big brother and sister!

Yes, we are still alive!

Bad, bad, bad blogger...I know! When I have had a couple of moments to be on the computer I have been working on a video montage for Dane to celebrate his first "adjusted" birthday. It really looks great, but still needs some work...but I will post it as soon as it is done.

Dane is doing great, he is working with a new speech therapist to help with his choking and his communication. She seems great and really knows her stuff. She wants us to have a swallow study done on Dane as well as another hearing test, so those are on my to do list. She was very impressed with his ability to feed himself and was glad to see that he doesn't have any feeding issues. When she did the speech eval, she said that Dane was all over the board...some things he was at a 3-6 month level and some things he was at a 12 month level. He showed off his very impressive pointing skills, which I guess is a pretty big deal developmental milestone. She was happy to hear him making noises but would really like him to be doing more mimicking. So we will continue to sing, talk, sign and read books to him to encourage his abilitly to communicate.

His new thing is shaking his fingure at us after we tell him "no" or "don't touch", we try not to laugh too hard...because he is very seriously scolding us for scolding him and this is no laughing matter to him! We think that he has a small touch of a stomach bug, resulting in what we have termed "man gas"! I am NOT kidding you either, we have all been shocked at the rumblings coming from his tiny bottom! We hope that he is on the mend because if we are in public and he starts in with the "man gas" there is no way that anyone would believe that is was him and they would be totally grossed out at the thought of Danes parents letting it rip in public...okay, I have gone too far...enough about the man gas.
I will be sure to take lots of pictures tomorrow, we are going to church then to my Mom's...we are thankful that the weather is so warm so we can soon say "bub bye" to RSV season!

I need a new look!

For my blog that is...and I am not fancy enough to figure out how to make it more orginal...so I need someone to help me do a "extreme blog makeover"! And when I say "someone" I mean you, Tracy!!! (Cuz, I know that's how you roll)

Enjoying spring...in the desert!

Yes, I know Spring is not officially here...but for those of us that live in the desert, Spring arrives in late February and leaves us in late March! We have been taking advantage of the great weather with numerous trips to the park. Dane loves getting outside and sinking his bare feet in the grass, and Mom loves it too! It dawned on us that we missed Spring entirely last year, we spent all of our time the NICU and when Dane came home April 30th it was already in the high 90's...so this year we are extra thankful that we can put Dane in the stroller and just go! No oxygen or wires to slow us down!

Dane continues to do great during his therapy sessions. We have cut down on early intervention to twice a month, we will continue physical therapy once a week until he is walking well, and we have just added a speech therapist. The speech therapist is going to do an evaluation next Monday, to see how often she needs to see him. Though I must say that his babbling has gotten a lot better in the past two weeks. He is saying "mama", though he only says it when he is whining or crying. She is also concerned that he is still choking on water and juice, so we will explore that as well. Over all he is doing great, and progressing at rate that is quite unheard of for a 26 weeker with massive brain bleeds! THANK YOU JESUS!!!

Schult Manufactered Homes (Chad's main dealer) has expressed some interest in matching our donations for the March for Babies. There has been talk about them sponsoring us with hats too! We are so excited about this, though it's not a for sure thing yet...but they did call us today to get more information, so we are encouraged that it's going to happen!

A special thanks to all who have donated so far on my page:Uncle Dick & Aunt Judy,Mom and Dad,John and Julie,Scott and Margo,Lori and Pat and Aunt Terry. Thanks to Angela, Sandra, and Kelly for signing up as walkers and doing your own fundraising!

Developmental Evaluation

We bought him this snazzy little number, multi colored, it converts from a ride on toy to a push toy...pretty cool, right?
WRONG! He played with it for about 7 seconds then went straight back to chewing on his Dad's leather belt...maybe a chew toy from Petco would have been a bigger hit?!?

We took Dane on Monday to Phx. Childrens for his developmental eval., he will be evaluated there every 3-4 months until he turns two. Anywho....the lady sat and gave him all sorts of little tests, she watched the way he moved, how he pulled himself up, how he problem solved and stuff like that. They are going totally off his adjusted age of 9 months, and for everything except speech he is at a 10 month old level! She said again what we have heard so many other times, "he doesn't look like a 26 weeker with a grade IV bleed!"....ahhhh, music to my ears!

She said she is confident that he will be walking when she sees him again in four months! Too cool, huh?!? This little boy just amazes me, he is so full of it and determined to figure stuff out...it's like you can almost see that he has to work a little bit harder to get it, but once he does there is no stopping him. I can hear Dane having a melt down as we speak, I better go help out...maybe Daddy's leather belt will help. For him to chew on that is...I better watch what I say about Dad's leather belt, it could get us in trouble with CPS!

March for Babies!

So, as I have been reflecting back to last year...I was not able to walk in the March of Dimes walk due to our crazy schedule of life in the NICU and the life that still was going on in our home with a 16 & 10 year old, two dogs and my husband. My cousin Celeste, who is a NICU nurse in Rhode Island walked in honor of Dane last year. We are so excited to be a part of the fun this year, and would love for everyone to come out and walk with us! If you aren't able to walk with us then a donation would be great and can be made on my March of Dimes website: http://www.marchforbabies.org/DaneRobinson
This is the easiest way to make a donation and ANY amount would be appreciated!

First time holding Dane

He was one week old, still on the vent, and we were waiting for the results of his second brain scan. We had no idea that we were going to get to hold him that day, and I was so nervous when the nurse asked if we were going to hold him kangaroo style (skin on skin). The brought over a big recliner, got me all positioned...and made sure that I wasn't going to need to get up for the next 30-40 minutes. You see, it is so stressfull to move these fragile babies in and out of the their incubators. Once he was comfy and stable on my chest they didn't want to move him again for a while. It was crazy though, there were two nurses and a respitory therapist there to move him on my chest. One to pick him up, one to hold all his wires and tubes, and one to put warm towels on us...and that was the pattern for holding him for next two months. I remember longing for the day when I just go and pick him up with out a a slew of medical staff helping. I remember being so scared that his tubes were going to come out, I think that I spent the entire time watching his monitor than enjoying actually holding him. It was great though and another day that I will never forget.

We are on our way today to have another developemental evaluation done at PCH. I'll be sure to let everyone know how it goes...I am sure that he will continue to amaze them!

Happy Valentines Day...what a difference a year makes!

Last Valentines Day was a tough one. It was the day that I came home from the hospital, which pretty much sucked sense I wasn't going to be bringing home Dane. I only wish that the story ended there. I was emotionally preparing my self for leaving Dane at the hospital, when one of my good friends David came in to visit. We headed down to the NICU to see Dane and the nurse said, "let me get the doctor"...hmm, that was never said to me right when I came in. The doctor came over to me and began to tell me that they did an ultra sound of Dane's head and that he has bleeding in the brain. I went numb. They got me a chair, I think there were afraid I was going to pass out. The doctor began to draw me a diagram of a baby's brain, she then drew out what a grade one brain bleed looked like and explained to me that a grade one usually doesn't cause any life long problems, then she filled in her little diagram more and explained a grade two bleed and said that it most likely would cause minor damage like wearing glasses or mild learning disabilities. Then she filled it in more to show me a grade three, and how there were more serious life long disabilities like mild to severe cerebral palsy, among a list of other things. Then she filled it in more...a grade four bleed...she filled in the diagram even more to show that a grade four can actually spill out to other parts of the brain causing damage and leaving cystic areas to all brain matter that the blood touches which could result in death or severe disabilities like no walking, talking, even crawling or feeding.

Then she said it, "Dane has a grade four that has already spread out to the brain matter on the left and he has a grade two on the right".

I honestly don't think that I heard anything else she was saying, I was in total shock. WHAM...welcome to the NICU roller coaster ride I had been hearing so much about. The one very cool thing that happened in the midst of the this is while she was talking I clearly heard the Lord's voice over and over saying "I HAVE A PLAN". There are times you feel God, circumstances where you know God's hand was involved in situations...but few times you hear God's voice. I know that I heard God's voice that moment. With tears streaming down my face, I looked at the doctor and said, "God has a plan". I think that she thought that I was nuts, but that's okay...I was just telling her what was going on. My poor friend David was stuck there in the middle of all this, he just lovingly held my hand. I needed to call Chad and tell him to get to hospital, so that the the neurologist could talk to us both together...the rest is kinda a blurr. David wheeled me back to my room and prayed with me, and waited with me until Chad could get to the hospital. I look back now and also know that David was exactly where God wanted him to be too. Chad got there and we nervously went back to the NICU, the neurologist was not there so the doctor came over and told Chad what she had told me...I believe that this is the first time she mentioned us needing to consider taking him off life support, due to the extent of the damage to his brain she was concerned about qualitly of life. She was also concerned because Dane was only 4 days old and most bleeding doesn't hit it's max until day 7 of life...so we were prepared for it possibly getting worse. I remember thinking that he looked so perfect, how could all of this be happening and we don't even see any signs of it? It was the worst feeling in the world. And now we had to go home. Leaving a VERY sick little boy behind so that we could go home and wait for the neurologist to call us and tell us her opinion on Dane's head scan. We left the hospital with no baby and uncertainty of ever bring him home. I was so angry at God, he told me he had a plan...I felt his presence, but was soooo angry. I didn't pray one single prayer that night while we waited for the phone call. Like a mad little kid, I was not speaking to God...If I would have seen him I might have folded my arms and stomped my feet at him.

The neurologist finally called at around 7:00 and said these magical words to us, "let's give him a couple days and see what happens", she also said if he makes it he has a 75% chance of having severe cerebral palsy. Not what any parent wants to hear but it was the best news in the world to us. We sat and explained it all to Gage and Katie, and I must say that we have the best kids in the world. Katie snuggled with me and cried...Gage said very confidently, "I think he is going to be fine." I think that God was speaking to more than just me that day, Gage was almost getting annoyed with us because we were so upset, it was like he knew what God was saying to him and we weren't listening. Pretty cool for a then 16 year old. Dan and Kelly came over and hung out with us for a while, I think that there was some wine shared between Chad and Kelly...it was good for Chad to have his sister there.
Chad was my hero, he took care of me in a way he never had before. You see I was pumping breast milk, so I had to wake up every 2-3 hours to pump, on top of recovery from my c-section. But Chad woke me up, and had everything ready for me he actually stayed up with me too ( and if you know Chad this is no easy thing for him). I don't think that I would have continued pumping if it wasn't for him, it was so painful and I there was a part of me thinking "what if I am going through all this and the baby doesn't survive to even use it"... thankfully Chad was there to encourage me.

Since that day last year Dane has steadily climbed up, he is a true testiment to the power of prayer and God's faithfulness. But Valentines Day will always have a new meaning of love for me, this is a day where God showed His love in an extraordinary way. Not chocolates or roses, but a strong yet quiet voice reminding me that He has a plan for Dane and our family.

Here is Dane playing with his new guitar from Grandma and Pap Pap!

cool pictures...

This was the first thing that I saw from the NICU, I hadn't seen him yet so this diaper was all I had to go by. And yes, he was swimming in this diaper!
This is the first picture taken of Dane with Chad's phone moments after his birth. His agpar scores where 6, 5, then 1...very scary! They had a hard time getting him intubated.

I never thought that he would grow into those toes...

Happy Birthday Dane!

Okay, so I am a day late...

We decided we needed to somehow go out and celebrate making it through the past year by going out to eat with the birthday boy. We went to Island's because they would reserve us a little table outside (to avoid the germs)...oh ya, our cutest friends in the whole wide world bought us a gift certificate too (Brian and Stacy). We went at 4:00 to avoid the crowds, sanitized the table and enjoyed each others company and the nice weather. We are going to have a real birthday party for him when RSV season is over, hopefully the beginning of May, it will also be a celebration of when he came home from the hospital. We did take some cup cakes to Pap Pap's and Grandma's and sang him happy birthday, of course he just wanted to grab the candle. He ate the entire cup cake too!

So last year...I woke up and was feeling better, I think that I had been off the mag like 6 hours so I could begin to feel my body coming back to life. Kelly had stayed the night with me and when she headed home in came the rest of the troops. I remember having an entire room full of people, and how great it was to be able to communicate with them! The morning went well, they got me up to walk around the nurses station and everyone was feeling hopeful. I was stable all was well, so everyone left to go have lunch...I should have known something was going to happen, remember what I said about being alone? Out of know where the contractions started, and they were fast and furious. One of the docs came in and checked and I was at 5 -6 centimeters, not good. Dane was in the breach position so a c-section was a must. I called Chad and he had to leave Gage and Katie in the waiting room, while they prepped me for surgery. Chad started calling everyone to come back...Dane wasn't going to wait any longer, he was coming NOW! It was like a scene from ER, they were literally running with me down the hallways. They threw some scrubs to Chad and told him to change and meet us in the O.R. (which has a VERY funny story of it's own, that I will only share in person!). There was no messing around I think that I was in the O.R. for like a minute and they were putting in the epidural, and unfortunately they were cutting me open before I had time to completely numb...I was in a lot of pain...last thing I remeber was thinking "this isn't how it happens on TLC's Baby Story!" Then it was lights out for me.

I woke up very confused in the recovery room, it took me a while to figure out what was going on. I had to remeber that I was pregnant, and went into preterm labor...and oh ya...I had a baby! The first thing I asked was how was the baby, the nurse said that he was stable in the NICU...then out of my mouth flew "well, God loves him more than I do...so he is in good hands"...I am quite sure that she was like "okay you big wacko", but that's how I was feeling, why I felt like I had to tell her is beyond me, maybe the drugs. I stayed in recovery, for a little longer than usual...I was very dizzy. Chad and Mom were in there with me...what else does a girl need? Maybe my Dad too, but the nurse was breaking the rules by letting my Mom in. They finally wheeled me to my room where again I was blessed with so many family and friends. I clearly remember feeling very smelly and in need of a good shower, everyone kept hugging and kissing me and all I could think about is how gross I must have smelled! I was still in denial of what it meant to have a baby at 26 weeks, but I was so full of peace from the Lord that I just wanted to take a shower!!!

Our Anniversary

Today is Chad and I's 17th wedding anniversary, this time last year I was on my second day of mag and feeling the effects fully. I was having a hard time breathing, seeing, talking, eating etc. They took me to have an ultra sound to see how much amniotic fluid I had, which was not great but okay. They estimated Dane to be at around 2lbs 4oz...which they were pleased with because he was big for his gestational age. Things sounded good so everyone left my room and I started to doze off, when I felt a gush of water...I prayed that it was my catheter that fell out, but I knew my water had officially broke. The nurse confirmed it, which brought in a whole slew of doctors to come and chat with me about the risks of carrying a baby with premature rupture of the membrane. I look back now and everytime something serious happened my room was empty, which is really crazy...because there was pretty much always some one there with me. When my water broke I was alone, when the doctors came in to chat with me I was alone, finding out I was in preterm labor I was also alone...I don't know why God planned it out that way, maybe so that my dependance would lie solely on Him. So, everyone headed back up to my room...I do remember that I had to be fed, the food was awful too. I just kept thinking as people were shoveling food in my mouth that I had to eat so that Dane would get bigger. I clearly remember thinking whatever I had to endure would be worth it, that the liquid hot led they were pumping through my veins was going to keep Dane in me for a little longer. Kelly spent the night with me, which was nice so that I didn't have to rely on the nurses everytime I needed a sip of water. I remember a large mexican family was having a baby in one the rooms close to me, I could hear the mom screaming during delivery and I could hear the entire family yelling and cheering when the baby was born...I remember hearing that baby cry...and that is when it hit me for the first time. I may never hear that. The one good thing that happened this day one year ago, besides all of the blessings from family and friends, was that I had made it through the final injection of steriods to help Danes lungs. I made it two days with out going into labor, and the NICU doctor told me every day that Dane stays in me is 3 less days in the NICU...so I was at least thankful for that. By the end of the night I was on oxygen, and they were starting to wean me off the mag...I don't think that my body could handle anymore of that stuff.

Dane is taking a nap, sleeping peacefully in his bed completely clueless to the miracle that he is. Tomorrow he will be one...it's the strangest feeling, a combination of celebration and mourning. I am glad he is too young to feel anything from me that is less than celebration and thanks to God, but the reality is that I wish that his birthday had not come when it did. I remind myself that it is God's plan, and his plans are perfect.

This time last year...

I had been in the hospital for 24 hours, high and groggy from the mag. I was in a good place emotionally, I had tons of family and friends coming in and out of my room bringing love, prayers, gifts and laughter. I was dialated to 3, but stable. I think that I was in total denial of what layed ahead for our family and I was completely ignorant to any and all aspects of prematurity. You see everything was going great until this point, so we had no need to ever explore the prospects of having a preemie. Yes, we were resting comfortably in the hands of our Lord...fully trusting in his plan.

I will try to post every day for the next two weeks for two reasons...

1.) to use this as some sort of therapy for myself, when this was all happening I just put on my game face and did what I had to do...I think I am just now starting to grieve what happened
2.) to give people MY perspective of what happened (not that any one cares...but hey, you are reading my blog!) : )

These were some pictures of today, just me and Dane hanging out in what used to be our pool table/game room...it is now Dane's game room!