HOMECOMING 3/22/12

AUSTIN MADE IT HOME!!!!!!

I haven't had the time to get on here...  Austin made it home on Thursday!!  What a journey!  So a recap of the past few days...  I finally finished everything around the house!  Spring cleaning at its finest!  Austin's room turned out EXACTLY as I in visioned it!  (I will post pictures soon).  Wednesday evening, Scotty and I did our CPR class and our "sleep in" with Austin.  The two of them slept great, I, on the other hand- not so much.  We did well with Austin in room.  Thursday morning, we sat in on rounds, where they let us know that we do not have to stick to a strict feeding schedule.  He is an older baby now, and we should let him eat when he is hungry, at any length of time.  (We had been not letting him go longer than 4 hours-even at night)  Austins length and circumference are proportionate with one another, his weight is much higher than his length average.  With that being said, if he goes through a little bit of an adjustment period and doesn't eat really well when first home, not to worry, as long as he is still having a good urine out put.  I am glad they told me that!!!  Austin has not been eating well, until this evening.  He was only taking about 1/2-1 oz each feeding.  He had terrible gas cramps.  I finally worked him through the gas and he began to eat better!!!

When we brought home Austin, Thursday, we had a lot of oxygen "training".  It was a long morning learning the travel tank at the hospital and then about 1 hour after we made it home, it was about three hours of more info on the back up tank, the main system, the fill up system and all the "bells and whistles" (tubing, etc).  On Friday the home health care nurse came over and did an evaluation on Austin.  She said she only anticipates the one visit, since we really have a grasp on his health issues.  They will come out one other time for his synagis shot (RSV) in April, and then that should be it, unless we request a visit.  I have a binder full of information about his oxygen therapy... I am also keeping a binder myself, all of important information from discharge, and I will continue to put in the continued information on his medical history.  I am keeping a log of his medicines (dose and times) so that I do not forget anything.  I am keeping a log, for now, of his feeds and diapers.  I am trying to sleep well.  My husband has been great about having me go lay down.  Luckily, Austin is older so he sleeps a good 5 + hours stretch... and yes its at night!!!  (usually just after 1:00am - 6:00am or so).

I was pretty stressed today about him not taking in much volume of his milk.  (He is on my breast milk with fortified powder)  I called the doctor from the NICU who reassured me that as long as he is not "acting like a sick baby" and still putting out urine, to hang in there.  Scotty reminded me to go with my instincts as a mother, and forget being the Nurse Mom.  He is strong and doing well, otherwise he would not be home.  He is right.  Once I was able to take a step back, I realized I was trying to make him eat every 3-4hours and when he was fussy just immediately thought, he needs to eat.  I went ahead and rubbed his belly and did the "bicycle" with his legs and helped him release the gas.  He then ate excellent, and in turn, made me feel better!!!

All and all, we are doing very well!

DREW MEETS AUSTIN!!!!   Oh my gosh!  I never knew the happiness, joy and heart warming feeling that that moment could bring!  It was amazing!  Drew arrived home from school with the biggest, warmest smile EVER!  He was so enchanted with the moment!   Drew walked in and looked and smiled and said "I am going to change my clothes and wash my hands, then can I hold him?"   ABSOLUTELY!!!!  It was then that I realized, not only had this moment been one I have so longed for.... but Drew was longing for this moment too.  He, too, was more than elated to meet his brother!!! 

Drew held him and said over and over again... "his eyes are so blue... like mine".  Drew asked if we had shown him around the house, which we had not because we were waiting for Drew to get home (and dealing with the oxygen RT setting up and explaining everything to us).  Drew asked that I carry Austin and he will tell him each room.  It was very sweet.  As we were walking back into the family room, I said to Scotty, "lets put him down so we can get this stuff all organized" and Drew immediately said, "how about I can hold Austin, we can put on cartoons. I will watch a baby one, like Elmo or something with him".  ((Awe, my heart melts again as I am writing this!!)) 

We have sat down and explained the equipment with Drew and have practiced calling 911 with our pedimed number, etc.  He lays next to Austin and interacts with him often.  He does have his periods of time when he's "had enough" and just wants to do his own thing, too.  He's 7!!  Last night Drew did give Austin a finger puppet show!  Too cute!  We all sat in Austin's room last night with the lights off and the Twilight Turtle on (sprays lights of stars and the moon on the ceiling and walls) and we sang twinkle twinkle little star!  I can honestly say I never imagined in a million years that my heart could be filled with love to this magnitude.  I really really have so much love in my heart.  Pure joy and happiness. 

PICTURE TIME!!!!!!!!!!  (i am posting a lot... i am a very proud momma!!)




Austin is READY to leave the NICU!

ANGEL

Happy Baby

Too Cool!!!

Nakey boy!

Oh, gosh he is soooo cute!

Peace!

Drew meets his baby brother!

Brothers, just hanging out!

Finger Puppet Show

L.O.V.E



zonked from tummy time

YAWN!!!!




Thank you to all of you for your love and support!!  This is the best life I could have ever imagined!  Although for Austins sake, and his sake alone, I wish he could have had more time in utero and I wish he didn't have some of the problems he has, and I wish some of the scary moments didn't have to happen....  I am so very happy with where we all are in our lives as a wonderful family of four!  I wouldn't change my today for anything!


"Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit" -Romans 15:13



An end to our NICU stay is upon the horizon

Its been longer than I like since my last post, but I have been busy!  I am trying to get Austin's room finished, along with making sure everything is in "order" with every other part of my life.  I have been doing this while trying to deal with very high anxiety.  Not an easy thing!!!!  :O)

Austin is doing super well!!!  The doctor had said to me on Thursday, "...would be a good time to sit down with the discharge nurse and began discharge preparations...".   Since that day Austin has really begun to "take off".  He is now at a 1L flow at 100% FIO2's to get him weened to home settings.  He is feeding well.  Yesterday Austin pulled out his NG tube and the doctor suggested giving him a trial (16 hours) of PO Demand feeds.  Meaning, he eats as much as he wants at what ever times he wants, as long as no longer than 4 hours between.  He did very well.  I am still waiting to hear from the doctor as to if they will keep his feeding tube out and let him continue on the demand feeds.  I am a little questionable as to exactly how they determine what a good amount is.  I am sure they set a bottom line of ml's of milk a day... I know he must continue to gain weight.  I anticipate they will allow him to continue this route for at least a full 24 hours to determine if he gets a good amount over the 24 hours.


SOOOO..... I had to stop this post and go to get groceries....and a lot of news since then.....   Instead of erasing and starting over, I am just going to go from here......

The doctor called to give the update after rounds... some changes!!!!  Austin's flow was adjusted to 3/4L and he is doing great.... he is doing well with his on demand feeds too!  Doctor said "we'd like to see him go home this weds or Thurs".......   Oh My Gosh!!!!!!!!!!!   Honestly, I have so much to do and was counting on at least a week.... lol.......  but we are ready to get him home!!!!  A thorough cleaning and setup of his room.... we will get it all done!   CPR class on weds, so most likely Thursday or Friday.   Holy Cow!   I never thought this day would come.... I mean of course I knew he'd come home soon.... but it happened so fast. 

I am so elated.  I cannot even express how happy I am.  We have come so incredible far.  Austin has made such amazing progress.  What a fighter he is!  I am so thankful to all of you for your constant thoughts and prayers!!!  THANK YOU THANK YOU THANK YOU!

I am so thankful to have an amazing GOD!  He is so amazing!!!!!!

I am so thankful for my family and friends.  My long conversations with my mom, dad, sisters and brothers... many filled with hyperventilating and tears... talks of nothing but medical terms.... each time they listened and never didn't answer, or acted as though they didn't have time.... THANK YOU!

I am so thankful for my husband and older son.  Patience and understanding from the two of them, amazing.  The opened doors of communication between my husband and I.  We grew a new kind of closeness during this hard time.  My older son has been amazing.... a 7 year old.  His life was changed in many ways too. He did so well....ever since the day I was on bed rest.  He is an awesome kid!!!

I cannot believe Austin's homecoming is right here..... its just a few days away!!!!  I will post so many pictures!!!!

I must log off and get into his room and finish a few things!!!!  YAY!!!!!

THANK YOU ALL FOR YOUR CONTINUED SUPPORT!!!!!

Breathing treatment

Austin is still doing well!!!  This is very exciting to me, of course it always is... but this week has been a "busy" week for Austin.  History shows he does not handle his immunizations very well, so I asked to have them spaced out through out the week...  He received a shot on Sunday, Monday, an eye exam (which looks good) on Tuesday and then yesterday did a breathing treatment of albuterol (I'll get back to this) and another (negative) RSV wash, today he will get his last immunization (for the month) and then Friday he gets another synagis for RSV and a repeat echocardiogram.  WOW!!! That's a lot.  So far so good!!!  

Yesterday Austin was sounding quite wheezy on his exhales, (he has had it intermittently for the past few weeks), and so the attending felt it may benefit him and help to open his airways a bit if we do an Albuterol breathing treatment.  He wasn't too crazy about having the mist blowing into his face, but he did okay.  She said he sounded much more clear and he wasn't wheezing , so that's good.  Before she orders it as once daily, she is ordering a repeat echocardiogram to assure that it is not cardiac related.  Apparently some wheezing can be caused by shunting of the blood by the heart... this would be new, he has not had heart problems, so prayers please.  If this is happening we will not continue the breathing treatments, as albuterol speeds the heart rate a little.

Austin is eating three bottles of breast milk a day and doing well.  He did not take to the breast very well.  He was latching fine, but once he lost his latch it was over.  I gave it try for five days and it was the same reactions from him.  Stressed out and refusing the breast.  I decided to continue pumping this next year to give him my breast milk and to build a larger supply in my freezer.  He does not take to change well and really does well with the bottle, and I think that was his "problem".  He likes the bottle nipple better.  I was a little bummed because I was looking forward to this mother son time, however, the important part of this equation is the breast milk itself, and I can still ensure that he gets it!! 

Austin is now 9 lbs 15.5oz.  He did hit the ten pound mark on Monday, but he lost a little bit as they weight adjusted the diurel.  He is getting longer too!  20 inches!  You can really tell he is growing length just by sight.  This experience has been crazy.  Very neat in many ways.   Austin is so awake and alert these days.  The doctors love when they go bedside for daily rounds.  They say even if he's sleeping, as they approach he wakes up and sits through the rounds everyday to hear his daily updates.  Quietly observing and taking it all in... perhaps he'll grow up to be a doctor!!  He is very nosey.  Everytime he hears a new voice in the room he is looking to see who it is, with his brow curled as to be thinking "that's a new one".  As someone walks by he is following them.  He is so attentive to me as I talk to him.  He is starting to push his tongue out and open and close his mouth as I talk to him, as to mimic me.  This is all so very encouraging to me.  Helps me to stay hopeful that all though he has had several episodes where he was deprived good oxygen, he may have been unaffected.  I pray and hope for that!!!!

Many days I wake up and still cannot believe how strong of a little guy Austin is... I mean, I am not surprised, as I have seen him over come so much... but to see that a small little (less than 2 pounds) baby can overcome and get through more than I think an average adult can....  Just amazing.  God's work.  I cant express enough that without FAITH, I would not have made it through this journey.  I would not have been able to.  There were too many times I was knocked back... TOO MANY... but God lifted me and kept me strong.  He has walked with me, with Austin, with my husband and other son, HAND in HAND.  It warms my heart each time I think about this.... that warmth reminds me that HE wouldn't have it any other way. 

I am very hopeful that Austin will be coming home in the next 2-3 weeks.  He is just so comfortable, seems so "organized" and well.  He is well!  Feels so good.   Another encouraging "event"... yesterday as I was talking to our FAVORITE fellow, Austin's nasal cannula came untaped (he ripped it off) and the cannula was close to his nose, but not in his nose... he kept sats in the 90's.  Dr. said he was so encouraged by that, because it shows the "flow" doesn't seem to be a factor.  I wouldn't be surprised if the go down on his flow today.  YAY!!!

I am feeling good about where Austin is currently, as for progress.  He is doing so well.  He has had a couple brady's the past week, but we are all pretty confident it has to do with reflux.  Other than that, he is good.  GREAT! 

I will always keep you all posted and updated on things... and I cannot wait to announce that we hit our "5 day count down"..... hopeful he's home by Easter!!!

Thank you for all of your support and prayers for Austin.   He is amazing!

Totally Spoiled

AUSTIN IS 4 MONTHS OLD!!!!!! (bottles, RSV yikes)

Austin is doing well.  He started bottle feeds on Monday.  He finished the entire bottle on his first feed ever!!!  He has finished EVERY bottle, but one (choked and brady'd so we didn't continue).  I am so excited to see him do so well with the bottle.  This is a HUGE step towards coming home.  We will start to really concentrate on his feeds and getting his O2 flow down.  He will be coming home on oxygen, that's pretty much a "given" so we just need to comfortably get him to adjust to a lighter flow.  I can not believe how long we have been in the NICU.  Its insane to me!  Austin is 4 months old today!  He is such a doll!  I love him so.  He is really alert and interactive these days!  It is so fun!  Austin's current weigh in is 9 lbs 10 oz.  Chub-a--wub!!!

Austin did have a couple episodes two nights ago.  He had yanked out his NG tube (feeding tube in his nose).  When his nurse replaced it, he clamped down and brady'd to 78 and sats dropped into the 40's.  He did have to be bagged, but did recover well.  They call these type of episodes "caused" or mechanical, meaning it was his body reacting to something they were doing, something unnatural for his body.  However, while he was sleeping, a few hours later, he had another episode, same stats and was again bagged.  The second one raises a few questions because it is very uncommon for Austin.  A few babies started to have a's and b's and began to act a little off.  The doctors decided to pull an RSV wash on all babies.  BINGO.  Thank God, Austin pulled negative twice.... but there were several babies that tested positive.  To a baby with lung issues, RSV could be fatal, and will always be major steps backward.  WE DO NOT WANT AUSTIN GETTING RSV!!!  THIS IS WHY ITS IMPORTANT HE STAY SECLUDED FROM THE WORLD FOR A WHILE!  I was a nervous wreck.  He has come so far and is finally making some huge, major progress.  We do not want to go backwards!!!  There are so many babies with RSV that they have now opened one pod to just RSV babies.  The unit has cut off all visitors other than parents and make sure that hand washing is being done properly (kind of sad you have to remind an adult to wash their hands before entering an unit full of sick babies).  God has once again blessed us and Austin is back on track again today, sucking down his bottles in no time at all! 

I am also participating in  MARCH for BABIES, (March of Dimes).  I am fundraising for research to help prevent preterm labor.  If anyone is interested in participating and/or donating, (any amount helps), here is my website:  www.marchforbabies.org/akimmey   I hope to raise $500 myself, $2800.00 as a team.  I think that I have found a new passion.  I really feel that there is a major lack of premature birth awareness.  I also feel that most people have an unclear view as to why premature births happen.  I feel most people think its caused, whether it be lack of prenatal care or drug abuse, etc.  That is not the cause, most of the time.  I hope you all will support me in spreading the word.

Another fabulous story....  The Cincinnati Reds, major league baseball team, sent us an amazing package.  The story behind this.... Last season my husband ordered a multi-game deal.  Sales called this year to offer the package, he just let her know he wasn't interested, she started into her sales pitch, he simply stated "its not that we don't want to, we simply cannot this year.  We have a premature son in the NICU and we do not know when he'll be home".  She thanked him and that was that.  Twenty minutes later she called back and asked if there were anything they could do for us.  She asked if she could send our older son something, anything.  He told her that would be fine and sent her our address.  We both had forgotten about it.  Last week the Reds organization sent a box FULL of stuff for all of us.  Here is a picture.

Austin has also been featured by a basketball organization here in Cincinnati, too.  www.sherwinstars.com  I wrote a short version of Austin's battle and included a few pictures.  Prayers from every where... its so cool!!!  He is so inspiring to so many people.  It warms my heart.  I have also been in contact with our local Parents magazine about raising premature birth awareness, feeling with March for Babies right around the corner this to be a perfect time of year.  I have been contacted and we will be doing a story on Austin and the March for Babies.  I am so excited!!!

NOW TIME FOR PICTURES!!!!!!!

This is Drew reading a book to Austin via FaceTime.... its so sweet!!!!  He says his bed time prayers to him too!

First bottle feed!!

Big boy bib!!





Again, thank you for your continued thoughts and prayers!!!!!  GOD is GOOD!!