2 Years Ago.... Today

Riley Today
approx 23lb and 32 inches






Riley at Birth 6-23-2007


1 lb 7.8 oz. 12 1/4 in.



Our First Photo all together before Riley came Home 10/22/07




Riley's First Photo without any "stuff"
(only removed temporarily for photo)




Riley getting ready to roll out the door.




Riley HOME 5 days later.



Carter and Riley Together

What a day this was. I can still remember some of the details like they were yesterday. After 120 days in the NICU, Riley was ready enough to come home. I remember how excited we were and how terrified we were at the same time. The hardest thing was leaving Carter. I had been at the NICU everyday except for maybe 10 days of the 120 days. Some days were good, some were bad and some we just don't want to think about.

You always hear the "stories" of my baby was a preemie. And yes, many children are born early. Then there are Micropreemies, which my children are. It's hard to think that they were so little when they were born, not knowing if they would even survive the first month. As the months past, the what if factor always remained, especially with Riley. Having 5 surgeries within those 120 days were terrifying.

So here we are, loading up the car with all of Riley's stuff including the o2 tanks, o2 concentrator, pulse oximeter and apnea monitor. I remember thinking in the car on the way home about all the equipment and hoping that nothing would happen. I don't think I slept much his first night home. He still was eating every 3 hours anyway so not much sleep. We kept him confined to the living room since that is where is was easiest to set up all the equipment. All the cords and tubes were long enough to move around the room with ease and lay on the recliner when Riley decided to take a nap.

His first doctor appt... it took me twenty minutes just to load the car. When we travelled, we travelled with most of the equipment - the apnea monitor and o2. That was enough and we also carried spare tanks in the car for emergencies.

To look back at the pictures now, I am truly blessed and fortunate on how far we have come and how much he has grown.

Pic o' Rama

Carter - It's still my turn on the Roller coaster
(This is one of their favorite toys they got for their birthday Thanks Aunt Suz)


Carter



Carter - No Pizza - thanks though

Carter

Riley - These are mine now!

Riley - Don't you love my Ruby Red Heels?

Riley - Eating with Papa and Uncle G.

Riley - My New Specs

Riley to Carter - What are you doing?

Riley - I love all shoes - especially Moms

Carter - Stop that flashing I just woke up!

Carter - Love my swing

What is Normal?

Ever ponder the thought..just want things to get back to normal? What is normal exactly? The life we once had, the life we hoped it would be or the life that is in fact reality? For all of us, there are varying degrees of normal and the reality is nothing is ever really normal. I read a blog earlier that stated "the only thing that is normal is the setting on the dryer". Never really thought about it like that but it makes sense.

Where am I going with this? Well, we went to a family reunion earlier today and everyone was so excited to see the boys. We don't get out that often with both of them so it was interesting to see them interact with people they haven't even met. This went very well considering their limited social interaction. Riley ate as well as to be expected and Carter ate as well (by the tube) and fell asleep in the stroller. Carter is not that graceful to be walking around and eating at the same time so I strap him in to feed him. Curiosity peaked some, especially the little ones, and trying to explain it in the simplest of terms can be rather difficult but I think they get the point - I hope. We try to seclude him as much as possible while he is eating as not to upset the other children but the curiosity gets the best of them and most are pretty calm about it.

Neither one seemed to have met a stranger and went to everyone that wanted to hold them but they were so curious of their surroundings that they could not sit still for long. Carter slept the most of the time we were there and Riley was into everything. Everything is an understatement to what this child can do. The word NO is not part of his vocabulary. I wish Carter would have stayed awake longer but the sleepy genie took over.

As we all know, our boys are developmentally behind. We work with them everyday and soon the day will come when others will consider them "normal" and in line with their peers. But for now we are normal, as normal as we can be considering all that we have gone through to get to this point. Fortunate that they are here, they are thriving and in good health.

It was a great day and we are getting them out and about more often as too not overstimulate them too much. We are enjoying the nice cool front here in August, a rarity during this time of the year, and getting them outside more to play.

On the medical front, Riley has his new glasses! I went with the regular style this time instead of the ear pieces that wrap around his ear for easy removal. That is the new thing learning how to take them off and then put them back on properly. Still working of the back on part. He is having a time adjusted to the new prescription since is has changed a good bit since last year. Changed so much so that his lenses are now special order. Special Order meaning additional cost - Woohoo. Not that I am complaining, he needs them to see. He can only see about 6-12 inches in front of him clearly and when he is not wearing them, he trips over things, runs into walls etc. As far as how bad, well - right eye: from -5.00 to a -8.50 and the left eye: -7.00 to a -10.00. He is still having issues with his left eye turning in and if things don't progress in the next 4 months then we will have to begin some patching to strengthen the eye muscles. But that's in 4 months.

Carter is doing well also. Not wanting to drink a whole lot by mouth so we are going to start trying the periactin soon. Lets hope this works and helps Carter learn that food in mouth is okay. He puts toys in his mouth just fine until it is accompanied with a smell. Carter goes to the eye doctor next week and I fully expect the Dr. to put him in glasses. Last year, he could see about 4 feet clearly but I feel that his vision has decreased since then as he only concerns himself with his surroundings and nothing across the room unless it's an open door.

Enjoy the pics coming up in the next post.

What's Up Doc?

Things have been busy around here with all the doctor appointments but so thankful that most of them are follow ups and check ups. So here are the reports:

Carter: The calcifications are smaller than they were in the last scan. No need for a follow up scan unless they start causing problems in his kidneys. It is not known if they will just keep getting smaller or move and decide to pass like a kidney stone (let's hope that is not the case) - so it's just a wait to see if they cause any problems.

Riley - Dr. Miller said to see him in one year. There is still that one spot he is still looking at but until Riley starts verbalizing "ouchee" and that area is bothering him or Dr. notices a change in the site - we are doing nothing. Riley does have little suture holes near his reinastimosis site that gets red every once in a while. They are like earring holes that get dirt in them. He can "fix" them if he is sedated and only takes a few minutes. So the next time he is sedated for a procedure, he is going to pop in and "fix" it. Lets hope it is not too painful.

They seem to be doing well overall and Carter has finally learned a new skill besides throwing toys. He decided to put them together and is now learning how to activate toys - yippee! He is so dangerous we he gets in a throwing mood which is not very controllable at this point so stopping him is very hard when "no" means nothing to him at this point. But we are so excited that he is learning how to do this! Riley is learning how to throw a ball and roll it back and forth with us. That is something new and he thinks it is fun.

I promise to post pics soon. Just trying to catch up on everything and have about 400 pics on my memory card that i need to download. Love the ability to see pics when taken but hate downloading them to the computer.

What's Going On

No a whole lot going on around here lately except enjoying the wonderful rain for the past week. They boys love to go outside now and when its raining they just beat on the window like lets go! Hard to keep them entertained when all they want to do is go outside.

During the month Carter had a swallow function study done. We were able to get him to swallow about 4 times and it was good enough to show that he can swallow fine and is not aspirating. We pretty much had a good idea that he was not but since he has not swallowed very much since Jan of 2008 we thought it would be a good idea. Thursday we went and had a renal ultrasound. We are awaiting these test results and hope to hear something by Tuesday. This was a follow up to a scan we had done in the NICU that should he had calcium deposits in his kidneys from the TPN. We started new speech and OT therapy and hope that we can get Carter to liking food soon. He does have minor allergy issues which have required us to try numerous allergy meds. Right now we are on a nose spray but while we were on liquid meds we were able to get him to take more by mouth which has been a bust lately. We may consider trying periactin to help boost his appetite but still toying with the idea.

Riley has a few appointments coming up. The one we can't hardly wait to get to is the eye doctor. His glasses are becoming too small again (only 6 months old) and he does not want to wear them as much since they hurt his face. Only two more weeks til this appointment! Lets hope they stay in one piece til then.

The Cribs...it only took a week and we got the new ones around July 12. Took apart the old cribs and returned them to Target. After about twenty minutes, got my store credit on the full purchase price of the cribs. Once you explain that you don't need a receipt and it says it on Target's website that recalled items do not need one - you are good to go. Unfortunately, we did travel their on a weekend where staff was limited but the woman behind the counter just started to do the return as normal and once the code was entered the screen politely explained to her what exactly she needed to do to refund my money. The best Target return I ever did except for the fact I had to get store credit.

I will post pics soon. This is the second day I have had the internet back up a running. The storms last week crippled my internet connection and prior to that my laptop when kaplooee. Thanks to my brother for getting me back up and running.

Heartfelt Sympathy

Please pray for the family of baby Kyle who went on the be with the Lord on Saturday, July 11th. My thoughts and prayers go out to these to families as they deal with the passing of their son, grandson and nephew.



The news of what this family had to deal with was all to close to home for me. Friday was the two year anniversary of the day we had to decide the same thing for our son, Lanny. The privacy, holding our son for the first and last time, and the removal of all the tubes, IVs, probes, etc., all to say goodbye and we will meet again soon.

As difficult as the decision was for us, my heart goes out to this family. It is not easy hearing that your son has no chance of life. Many families have to face difficult decisions everyday, but this is one no one should have to make.

Please keep this family in your prayers as they deal and cope with the loss of their son, Kyle.

Go Kyle Go

Please pray for Kyle and his family as he continues to recover. He has been in the hospital since he was born and has two heart surgeries since them. You can read his story here.