Our little Miracle

Our little Miracle
"And the Child grew and became strong in spirit, filled with wisdom; and the grace of God was upon him." ~Luke 2:40

Monday, April 30, 2012

March for Babies, 4/29/2012

What a wonderful event to be a part of!  I had a great team of 17, walking in honor of my sweet little Austin!  We raised $3009!!!!!!!  Woo Hoo!  Not bad for our first walk!  I can not wait until next years walk!!!!  We are team Twenty-six (+2)..... Austins gestational age at birth!  It was a great time!  It was very heart warming to see so many thousands of people walking for such a wonderful, (and close to my heart), cause!   There were many shirts with birth and death dates, angel wings.. young kids in wheelchairs or with feeding tubes.... It really shook me to my core...  I have been so very blessed!!!
Mommy and Big Brother

Twenty-six (+2).... I walk for Austin

Thousands getting ready to WALK for BABIES

My days with Austin home are becoming much easier everyday.  He still doesn't eat very well, but it seems to be getting a little bit better.  He slept great last night.... which in turn means I slept great last night!  I did an oxygen test today - which means, I took him off of his oxygen support for one hour to see how he does.  The doctors do not want his sats to drop below 85.  Well, good news.  He did GREAT.  His sats did not go below 95.  This does not mean he will be coming off oxygen soon.  Its just something to check to see how he is doing.  He did not start to act uncomfortable or seem to be working harder, so that is all very good.  I do believe he still works hard to breath while eating, crying, and after baths.  He actually holds very good sats while sleeping and on his back, which according to the doctor is when babies seem to need a little more support.  I cant wait for all the tuning and wires to be gone, but I do not want him rushed, or pushed to get off of them too soon. 

Austin is over his cold and he did very well with it.  I am so glad he handled it well!!!  My older son seems to be getting over his cough, he still has the sniffles... but what 1st grader doesn't!!! 

I finally caved and asked for help..... Everyone offers, "if you need anything"..... SO I ASKED..... I asked for help with pulling weeds in my flower beds, since I cannot go outside with Austin.... LOL      Thank you to my fabulous sister, I no longer have dandelions growing all over the front of my house!!!!!!

I again thank you all for your thoughts and prayers.  I am feeling much better since my last post.  I do still find it hard to see some of the exciting on goings around me, but what do you expect... I am stuck inside 24/7 - although I wouldn't trade having Austin here for anything in the world!!!!!

Friday, April 20, 2012

High Risk Appt.....

Austin had his first high risk appointment yesterday.  The doctor said he looks pretty good.  We were, overall, pleased with the visit... even though we were there for just under 4 hours.  YEP 4 hours!!!!  They did assure us that not all visits are that long.  I was impressed with Austin during this time.  He was awake and alert and did not fuss-- until, of course, they had to draw blood for some labs. 

Austin is doing well with his development in most areas.  As far as the doctor and OT see things, he is on point and doing great in that area.  He still is not doing great with feeds.  We have now begun Zantac and beneprotein.  He did gain weight, but not as much as they would have liked to see, and are wondering if his reflux is playing a part in him not taking good, full feeds.  Although he gets volume on the day, he is fighting a lot when eating, thus burning the calories.  Hoping some of the tips given to me help to straighten this out  The beneprotein is to give him a boost on growth - weight and length.

Although Austins airways sound great, he is still working pretty hard to breath, thus anticipating oxygen for a while longer.  I didn't expect them to say anything different on that end.  I know he's not ready to begin to ween.  He just works so hard to breath during feeds, after baths, if he's just cried... quite sad.

Over all, I am very happy with where Austin is.  He is communicating with us so much.  He is so full of personality.  Always smiling and babbling with us!  He has begun to try to control his movements, and this is so fun!  I call it the herky jerky's.  LOL

I have had a rough few days emotionally.  I don't really know why.  I just feel so sad for him sometimes.  I just wish it were easier for him.  I mean, the feedings are not enjoyable 75% of the time.  And add in a hard time breathing.... It just breaks my heart so.  I am also having a lot of "not fair" feelings lately.  I am just surrounded by so many others with babies born around the same time Austin was or was due.  Its hard to see it so easy for them, sometimes.  And its hard not to compare.... "So so is doing this....." .... Although Austin is almost 6 months old, he's developmentally only 2 1/2 months old, and sometimes it is hard to remember this.  I know I cannot compare him to a full term baby, but when its in my face all the time, I cant help it. 

I also get tired of hearing, "oh its probably just like having a newborn home".  No.  No its not.  Its much more worrisome and stressful.  I have to administer meds, measure every feed, track each and everything he does.  I do not ever have a moment of ease from this situation.  I worry more so than a new mom.  I worry about each cough... is it his normal pulmonary cough, or is it a cold.  I have to check his respiratory rate throughout the day to be sure he isn't in respiratory distress. I can not feed him when he is started to cry, i have to get to him before hand because other wise he will choke, bc he is breathing too quick to swallow.  I have to hold him and the bottle at certain angles when feeding him, bc his prematurity has caused a "hit" to his suck, swallow, breath development.  IT IS NOTHING LIKE HAVING A NEWBORN HOME. 

I sometimes just cant smile when I see a full term baby doing all these great things.  It honestly makes me mad.  I know that this is completely and totally not right.  I know I should be happy for them.  I know this.  But I don't feel it. 

I am so elated to have Austin home, and we have so much fun!  I am so excited with the new things he seems to be doing each day.  I hope we get this feeding thing figured out!  We will!!!!

Monday, April 9, 2012

Happy Easter...from Austin the Bunny!

I hope everyone had a wonderful Easter... the day Jesus rose from the dead.... just as He said he would!  Hallelujah!

We were confined to the indoors... with Austin having his CLD and such premature age, we will not be taking him out of the house other than for appointments... so whats this mean?  Mommy plays dress up with Austin!!!!!  We came across some adorable bunny ears in my older son's room and I found a onesie before Austin came home for his 1st Easter!

HA HA!!! I love it!!!!!  

We have all really adjusted to the "new" way of things.  The big adjustment is just around the corner.... Drew's baseball games begin....  My husband and I will have to take turns going to the games, as we can not take Austin out.  The doctors suggest that since our older son Drew has allergies, its more likely that Austin will, so that its best to stay in doors.  Bummer!  ~~ Then again, anything that will help his journey be easier is such a small sacrifice! 

Drew is so adorable with his baby brother.  He loves to help out, well most of the time.  He talks to him constantly... he randomly stops what he's doing to just walk over and give him a kiss... finger puppet shows.  Its so awesome.

Today Austin gets his synagis shot for April.  I will admit, I am a little bit nervous, as history shows, Austin does not like shots, and seems to have episodes... Ey, ey,ey.  Thoughts and prayers for us today....  :o/

My sister Holly came to visit and help out the last weekend of March.  My husband went to the Final Four games and we were delighted that she was able to come and visit.  This was her first time meeting Austin! She loves him so!  I will post pics in the future... I haven't had a chance to download the pictures.  Austin had his eye exam last week.  It is still the same.  Vessels are mature and fine in his right eye, most have fully matured in left eye, but there is still a small notch on the exterior... if this does not progress, it may affect his peripheral vision.  The docs are keeping an eye on it! 

I hope that everyone is doing well!!!!  Thanks, as always, for your continued prayers and support!  xoxo