5th month of RSV season down!

5 months...22 weeks....152 days...3652 hours that we have been in hibernation.  We can almost see the finish line now :-)  The only time we leave the house is for his physical and occupational therapy which is twice a week and mandatory doctor appointments.  Other than that Warren has stayed out of the public.  He has only seen his Oma and Opa (Bob's parents) since November.  Hibernation has been tough but thankfully we are almost finished. We are hoping that the end of April beginning of May we can start to bring him out and around people again.  As soon as the weather breaks and stays warm we can at least go for walks.  We had about 1 week of warm weather but other than that it has been only in the 40's, if we're lucky.  March is now over :-)

This month Warren started seeing a new GI and we've had some changes.  The latest were just last week.  He is now on 22 calorie formula and on his max dose of prevacid, which is given to him 3x per day.  It's been about a week and very slowly things are improving.  Hopefully this will be the last change for awhile.  The transition periods during the diet changes are incredibly rough.  I am not sure how many more I can handle.

He also had a physical therapy evaluation this month and started receiving physical therapy along with the occupational therapy.  Physical therapy is really intense.  He cries the whole time and typically throws up at least once during the session.  I am hoping that with time he will get used to it.  He has been doing so great with his occupational therapy.  He loves his OT, she is so kind.  If he gets upset she will stop take a little break and then go right back to it.  He always smiles as soon as he sees her.  Hopefully he will get the same way once he sees his physical therapist as well.  I hate seeing him cry for 45 minutes straight.  Fingers crossed that he will get used to PT.

He is eating stage 1or 2 foods with rice in it to thicken it up.  He also had avocado the other day and overall didn't mind it too much.  I plan on buying more avocado since it is so high in calories and good fat, maybe it will help plump him up.  He is eating about 24 ounces of 22 calorie formula a day.  He basically hits his minimum amount of calories needed per day so his weight should continue to climb.

He has also started sitting independently.  Everyday he gets better and better at it.  He still isn't the biggest fan of tummy time but I still make him do it numerous times throughout the day.  I am pretty sure he said mom or at least his version of it the other day.  He loves to babble :-)  There have been a few nights where I have been woken up to him babbling...thankfully not crying.  He is still a good sleeper and with daylight savings I have some mornings that he hasn't woken up until 9:30!  Yay for sleep!  He can also roll from tummy to back and then back to tummy.  We are working on all of his gross motor skills in physical therapy, everyday he gets stronger.  I almost forgot to mention that he cut his first tooth!  You can actually see it and feel it...he is getting to be such a big boy.  His latest measurements are (all according to my measurements and scale at home) are 13 lbs 7.5 ounces, 26 1/2 inches and his head is now 17 3/4 inches.  He fits great in 6 month size clothes and is in size 2 diapers during the day with size 3 at night.

 I guess that's the grand summary for this month.  It's almost Spring!

I think its time for mommy to buy me some new pants

Happy St. Patrick's Day!

Hi!

mommy is trying to make me sleep in my crib, do you think its working?

I love sitting up like a big boy now!

just playing with princess

reading the paper with daddy

I love my Daddy!

My auntie IS awesome!

Hi again!

On my way to PT/OT...at least I am happy before it begins!

I love you Mom

It's hard to believe that it has been 6 years since my mom passed away.  Some days it feels like it was yesterday others it feels like it just happened.  I will never forget that day and getting the phone call around 6 am from the hospital.  I didn't believe the doctor at first but then when she told me that I had to go to the hospital to identify the body than I knew it was real.  That day and the week following are a big blur.  She was only 49 and died from a heart attack.  Still hard to believe that it happened.  Still makes me mad at the world sometimes for taking her from me.  I still need my mom.

Ever since I have had Warren I find that I need her insight and wisdom more and more everyday.  Being a new mom without having your own mom for guidance has been really tough.  My mom loved kids and she would be spoiling the heck out of Warren.  I am sad for him that he will never know his amazing Grandma.  I just hope that she is always looking over us and keeping us protected.  I sure hope that she can start to help us with all of his feeding/reflux issues. I am not sure how much more I can handle.  I love you Mom.

We used to go on a family ski trip every March

We thought of you with love today.

But that is nothing new.

We thought about you yesterday.

And days before that too.

We think of you in silence.

We often speak your name.

Now all we have is memories.

And your picture in a frame.

Your memory is our keepsake.

With which we'll never part.

God has you in his keeping.

We have you in our heart..

        -Anonymous-

Dear Reflux...I am breaking up with you.

Reflux..I hate you...seriously.  Dealing with reflux has been so hard on all of us.  From the puking to the pain to the being positioned the right way, all of it is just so tiring.  Warren's reflux has caused so many issues with his development.  He has always had poor weight gain and oral aversions.  Today we had a PT evaluation and it looks like he has hypotonia and torticollis.  Hypotonia is low muscle tone/weakness and torticollis is basically a twisted neck.  He favors his left side.  So we are now adding PT into his treatment plan.  Let's just recap what we are doing now to treat his reflux.  He is on prescription formula called Neocate, which we are mixing to make it 24 calories per ounce and adding in oatmeal cereal to thicken it up.  He is also on prevacid to help with the pain associated with the reflux.  He is receiving OT to help with his aversion to food.  

My heart just keeps breaking because I feel so bad for my little man.  His first 9 months of life have been so difficult.  He is happy but it's still hard not to feel so defeated.  When looking at the big picture I know things could be a lot worse but living in the moment makes me realize what a rough life he has.  He doesn't deserve any of this.  It makes me hate my body for failing me and delivering him so early.  I know that it was out of my control but it is really hard not to feel guilty.

He never had any reflux in the NICU so I thought we would be fine.  As he is getting older the residual effects of his prematurity are showing more and more.  I always try to turn every situation into a positive but I feel like I just keep getting knocked down.

But let's look at some positive things.  He is happy.  He smiles and laughs and is a great sleeper.  He has gained 10.5 lbs and has grown 10 inches since he was born.  He started eating his bottle awake.  He has the most beautiful blue eyes and most affectionate personality.  He is the love of my life and I am truly so thankful for him.  He loves to cuddle but also loves to play. He is just an awesome baby.

I know that with time and the help from PT/OT that things will get better.  His GI also hopes that as he gets older he will outgrow the reflux.  We just need to keep plugging away.  We will get there.  Thanks for reading this post and sorry about being so down, but today has just been a really rough day.  Oh and just to reiterate...reflux..I am for real breaking up with you.    

Staring down reflux

New GI...new treatment plan

Yes you read right..a new GI.  Warren's original GI, Dr.B unexpectedly passed away on February 18, 2011.  So we were forced to have to find a new one.  I was very saddened over the news because he was such an amazing doctor.  He really listened to me and he cared for Warren and wanted to help us.  His office was amazing, if I ever had a concern I could call and they would get an answer back to me quickly.  I didn't know him for long but I am glad that we met.  My condolences go out to his family.

We were fortunate enough to get into a new GI rather quickly, Dr. M through Children's Hospital of MI.  We met with him today and we now have a new treatment plan.  We are increasing his calories on his formula from 20 calories/ounce to 24 calories/ounce.  We will also start adding oatmeal into his feeds to help thicken them up so that he throws up less often.  We are also going to do some changes with his reflux meds.  We are now only going to give prevacid 1x in the morning.  We might change that later.  We'll have to wait and see.  The GI was fine with us feeding him 4-4.5 ounces every 3.5-4 hours so fingers crossed that the increase in calories will finally pack on some pounds.  I am also waiting to hear from a nutritionist to help us make sure that Warren is meeting all of his caloric needs.  He wants us to check back in a couple of weeks to see what progress we have made.