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!