Echocardiogram and windows

I LOVE THIS PICTURE SO VERY MUCH!!!

 

Austin is doing well!  He had an echocardiogram on Thursday January 26, 2011.  The doctors concern was possible pulmonary hypertension (high blood pressure around the lungs).  They check this by an echo-- if the right side of his heart is over working they will intervene via medicine (Viagra - actually)...  The echo went well.  He was very calm and collect and let them do what they needed with out giving much of a fuss.  What the saw on the echo was good.  His heart is good and all the valves are closed, etc.  Doctors do expect to see some degree of pulmonary hypertension because he has CLD, but to what severity is the question.  (Back up.... the reason they decided to do the echo was because Austins progression has plateaued... he's just kind of "stuck" so to say)    The number of a normal, healthy, full term baby's heart is 20%.  Austin's is slightly elevated to 36%.  The doctors are impressed by this number.  It is not high enough to require any treatment (Viagra)!  All he needs is growth and nutrition.  Another words... same course we've been on!  YAY!!!!!   

Austin also had another eye exam on Weds, Jan. 25, 2011.  It is still showing that his eyes are maturing well.  Minor abnormalities.... nothing to require treatment/surgery at this time. 

Austin is up to 45 ml's (1 1/2oz) per feeding - every three hours!  He is now fortified with Neo Sure and doing well with it... they have stopped his once daily prune juice as he is stooling well .... he actually has the worst diaper rash ever... breaks my heart.....  ;(         He is still getting potassium 3 times a day, diurel once a day,  and his daily multivitamin.  He is still on a Cpap with a peep of 5 and btwn 25%- 30%.  He is still windowing and is up to 3 hours twice a day at 1.5L flow, and 28%-30% O2.    

He loves his bouncy seat and his baby lamb that plays soothing sounds.  I need to go buy him a good mobile with flashy lights, music and movement.  The nurses and I have come to the conclusion he is just so bored! LOL  Poor buddy!  He has been doing the same routine over and over and over again for 12 1/2 weeks now!!!  I'd be bored too!  He is finally at the age to be able to handle a little more stimulation!  TARGET here we come!!!!!!!   

I hope everyone is reading this with a smile from ear to ear!  I am smiling as I write this today!  He is doing so wonderful! I love him soooooo!  I put together a picture album today with all his pictures from birth to the present... very crazy!  He has come so far!  My older son Drew has shown more emotions lately concerning Austin and when will he be coming home.  I wish I had an exact date to give him so that we could do some kind of count down... that would be fun.... I just tell him... soon.  I am honest with him.  I tell him the few steps he needs to conquer and I estimate it to be in March.  He's okay with it, but would much rather have him here NOW!  :o)

Thank you all again for all your love and support!  Your prayers mean the world to me and my family! 

MANY BLESSINGS!!!!

xoxo

On an upswing

Its been about a week since I have updated.  I have been busy... meeting up with friends and getting all of my errands finished.  I only have an X amount of time until Austin will be home.  

Austin is doing FABULOUS.  He looks great and he is doing even better.  His FIO2's are consistently at 25% -- they have even had him down to room air (21%) but most consistently and comfortably at 25%.  He has started back with the windowing process, in which he is doing fantastic.  He is still on one hour windows twice a day and doing well.  They will go up to two hours twice a day here soon, but we are all on the same page with the fact that we do not want to push him along too quickly.  He needs his time and likes to go at his own pace (stuborn like his mother).  My new goal to have Austin home (with the small setback we had last week) is for the first week of March.  I think that is a good goal to have.

Austin is on 40 ml's of food (1 1/3 ounces) and have switched the fortification from the Elacare(basically baby creatin) to a formula fortifier.  The doctors wanted to see that his intestines could digest it correctly, and to check to see if he had matured enough to handle the dairy, (I was also asked to reintroduce dairy into my diet).  He seems to be doing well with it.  They put him back to "gravity" feeds, rather than on a pump over an hour.  He is doing well with that as well.  I think the pump was more cautionary and perhaps for MY comfort- considering the bad choking episode last week. 

Austin has been introduced to a few new things this past week.  A mobile that plays music (he really likes music), his soft sound machine LAMB (it plays the ocean, heartbeat, rain and whale sounds), and the vibrating bouncy seat (in which he LOVES).   Having these items and seeing him enjoy them really makes me realize how very far he has come.  When he was first born the stimulation factor was null and void. DO NOT TOUCH BABY OTHER THAN A FIRM TOUCH- NO STROKING, NO TAPPING.  TALK QUIETLY- BABY CANNOT HANDLE A LOT OF NOISE.  NO ROCKING WHEN HOLDING HIM.  NO LIGHTS, NO MUSIC, NO VISUAL STIMULATION - BABY'S BRAIN CANNOT HANDLE THE STIM.  IT WILL BE DETRIMENTAL TO DEVELOPMENT IF INTRODUCED TOO EARLY... HIS BRAIN NEEDS TO FOCUS ON GROWING AND MATURING BODY...NOT ON FIGURING OUT WHAT THIS or THAT IS.   I felt like there were so many rules.  So many DO NOT's and not enough DO's.....Well he has outgrown the rules!!!!!!!!!  Play time here we come!

Austin is 6lbs today!  Some of that is some water weight, as they just adjusted his diurel dose a few days ago and it will take a few days to show its working.  He is such a chunk .... so funny!!! 

I love this because it shows how incredibly chubby his cheeks are!!!
I call this picture McChubs.

I walked in and had to giggle..... He is so short (17 1/4"). LOL   He LOVES this bouncer.
This is also during his windowed period on the nasal cannula.



OMGosh..... When he is 25 he's going to kill me for this picture!!!!!  LOL
I pulled off his blanket and this is what he was showing us!  My in laws were visiting and we had a good laugh!
I assume these pants were a smidgen too short.  The pants had feet, so each time he stretched out the little crack would hang out.  I would pull them up, he'd squirm and stretch and there came his crack.  LOL.  I love it!

Again, I thank you for your continued thoughts and prayers.  This journey has been indescribable.  But none the less, the most amazing journey ever!  I am so BLESSED for the family GOD has given to me!  I couldn't be happier!

(*side note*... its been brought to my attention that my blog brings so many tears, happy and sad, alike.  This is not my intention to make you cry...  BUT I want you to know that many times while writing I am crying too.  This blog is written from my heart.  It is 100% raw emotion behind each and every post.  I hope you're able to realize that even though I have my bad days... the positivity in my heart has never subsided.  I have not one inch of guilt, blame, pity or shame in me from this experience.  I am extremely happy on so many levels.  I know that I would never wish some of these experiences on another, I have seen some things no mother should see.... how ever, I wouldn't change this experience, either.  I have grown and my husband and I have grown, my older son has grown.  We have grown as a family... stronger, in many ways.  I never knew how much strength I possessed internally. *)

 CHECK BACK SOON FOR MORE PICTURES!  I SHOULD FINISH PAINTING HIS ROOM THIS WEEK..... I'M SO EXCITED!!!!!

Time is slowing down

I feel like time is now moving in slow motion....

Friday, January 13, 2012

Austin was switched to a high flow nasal cannula from the CPap.  This was done for more comfort and it helps in a lot of cases of CLD when weaning the babies off of "pressure/flow" support.  I was not real keen on the idea, because he does not like change too well, and because he was doing great just the way they were doing things, but because of some miscommunication on the hospitals end, when I had arrived to talk about this possible switch, voice my opinions and ask my questions, the switch had already been made to high flow.  Can't go backwards and although I was not happy about being overstepped, I can only hope he does well... and the concept makes since and seems like he would do well, and I get to see his face all the time and pick him up whenever I want!

Austin seemed to be doing so well.  He was alert and happy.  I had a great day with him.  AND THEN... as I was feeding him (still through feeding tube) and chatting with his nurse T, he refluxed and choked on it.  He was choking and trying so hard to get it down and breath.  BUT because he is just at the gestational age for when they develop this skill (suck, swallow, breath), he didn't do so well, and could not correct this "problem" on his own.  Nurse T was suctioning out his nose and mouth ...  nothing.   His oxygen sats were dropping and his HR was dropping... he was choking....  The RT rushed over to help... giving breaths to him (bagging him).  I was pinching his feet and T was working at sucking out the feed so he didn't spit up and aspirate into his lungs..... His numbers weren't coming up.  He was turning the darkest blue/purple I'd ever seen.  His feet.... I couldn't stop looking at how purple his feet were, and then he went limp, and his bowels released.... "Get the doctors!!!"... the RT says.   His HR was at 52 and not moving... his O2's were at 1. The RT gave two chest compressions and his HR shot up in the 60's and started to climb... he was coming back up but he needed to take that breath.  Nurse T whacked him one and he took that breath.  His color started to come back, yet paler than his norm.  I picked him up and started rocking him and talking to him.... comforting him.  I was calm and praying the entire episode.  I think its from a mix of shock and - what good will it do them if I'm freaking out.  I can say that this is something NO ONE should ever have to witness. EVER.  I still haven't fallen asleep without that image in my head.  He's fine now.  Immediately after the episode, he was fine.  I was sick to my stomach and shaken to my core.  I asked nurse T, "how long do you allow that to go before you call in a crash cart (jump start his heart cart)... she said she was about 5 seconds away from calling one in.  ...............          ...............       ..........   I literally was watching my baby choke to death... but GOD has plans for him, and that is not one of them.  I couldn't leave for hours after the ordeal... until he opened his eyes and stared into mine as to say, "I'm okay mommy".  I will not go into how emotional and what type of thoughts this had brought about, because my husband is right.  HE IS FINE now and I can not take that episode away, no, but I need to refocus on the present and the future.  He is fine.  Austin is good.

Saturday, a day of rest and rest alone for Austin.  I didn't sleep the night before and tried my hardest to stay in bed as late as I could, but rest- it wasn't going to happen for me.  

Sunday, Austin is back on the CPap.  He started to breath very heavy too often, just working too hard to breath--so he is back to the CPap.  The thing about this that frustrates me is this....  we are now back at square one with the windowing process.  If you add up the time he windowed, the time he was on high flow, and the time of rest before we start back up... we've lost like 9 or so days.....  I cant help but feel like if they would have waited to talk to me and heard me out, this set back wouldn't have presented itself, because he wouldn't have been switched unless needed.   BUT again, one of those things you can not go back in time and fix....  so refocus.... PRESENT and FUTURE.

I'm not going to lie.  I am spent.   One word sums it all up for me.... emotionally, physically, mentally......  I am purely EXHAUSTED.  We have been here for 10 1/2 weeks.  And the end is not as close as I would like it to be.  Window process takes so much time and he still needs to learn to eat... with out the set back we were aiming to get him home by the end of Feb.  With the set back that date may have bumped back to sometime in March.  I do not want him  to come home until HE is ready....but.......    I don't know.  I know Austin and his little body and his immature and damaged lungs will go at the pace they need, not the pace we want.  He is in control, and I am okay with that.  I just really want to lay in bed and stare at him all day long.

Many blessings everyday....  time is all this sweet baby needs.... time.... to develop and grow....  time .
and he is okay.  he is fine.  he will continue to be fine. he is alive and breathing and doing great. austin is great.

Austin is 2460grams = 5lbs 6oz.... 17 1/4 inches long.  He is satting in the low 90's and has been between 25%-30% over night and this morning.  My husband is down there with him now, and my older son and I are cleaning the house, and then off to the movies.  Much needed mommy son time!

Thank you again for your thoughts and prayers.

Windows (and too much rambling from me)

Austin has been doing very well with his windows on the nasal cannula.  He is doing two hour windows, twice a day, and so far so good!  I love this time with him.  I get to look at his entire face, with nothing blocking any part of his face!  Its so fabulous.  He is so alert and awake anymore.  I love it. 

Its very hard for me to think about him being just this way, but in utero.  He has developed and grown so much.  It's crazy to think he should still be inside of me.... so weird.  He doesn't learn to eat until after he is well on the cannula full time, so we have some time, but I think he'll do well.  He sucks away on the pacifier!!!  When he is hungry he is rooting towards anything that comes close to his face, and if I'm holding him, my chest.  Its funny.  He also starts the sucking motions. 

OH I LOVE HIM SO!!!

Today I just stared at him forever.  I got to hold him for the entire two hour period.  I'm sure this is foreign to most parents.... but I am so excited about holding him for that length of time.  You have to understand, I still have to ask if its okay to hold my baby.... I still need "help" getting him out of the crib.... I still have to wait for care time to change his diaper.... I still have to keep him from turning his head when he wants to because he has an apparatus sticking out of his nose.... UNTIL now, my time for holding him was limited.  YES- TIME LIMITS to hold my own baby.  So yes, two hours means the world to me.  (my time is still limited since his care is every three hours... but I can hold him the hours in between) This means FULL TIME is coming soon, though!  He is making moves in the right direction!!!!  I hope and pray he continues to do well. 

I stare and stare and stare at him.... always so amazed.  Today I just began to tear up while staring at this beautiful child.  He has been through so much.  I have yet to have felt sorry for myself in this situation... I am not sad for myself one bit.... BUT I do feel so bad for him.  He has to work so hard just to breath.  I cant imagine how miserable it is to have the CPAP on him constantly.  I cant imagine having to be "handled" by some many different people, all the time.  I cant imagine having to have my mouth and nose suctioned out every three hours.  Getting heel sticks ever so often.... having my blood pressure and temperature taken every three hours...  and when he accidentally forgets to to take a breath for a few seconds, he gets his feet pinched or his back beaten (basically).  I just couldn't imagine having to go through so much, just to live.  These thoughts make me sad for him.  Life is supposed to be so easy when you're a baby. Its not supposed to get difficult until your first heart break (whats that age 15 - lol).... but sweet little Austin... his life has been difficult since day one.  He has had to fight day in and day out.  It just hurts my heart sometimes.  Here is this innocent, most perfect little baby, and he struggles and fights everyday to keep on going.  Its amazing, yes... but sometimes it breaks my heart.  He loves life so much already, that he keeps on fighting.  I hope this world is good to him. 

He is so beautiful.  I lay my head on the edge of his crib with the side down, eye level with him and just stare.  He has breath takingly beautiful LONG eyelashes.  His little nose.   A perfect profile.  He is angelic.  More so than any baby I have ever seen.  When he is awake, he is searching his surroundings.  He hears my voice and follows it until he's found me.  I know every newborn does this, but with him, its just.....i dunno.... I cant describe this feeling... I know he should live a normal life, bc thus far there is no reason for any of us to believe he should have any problems, considering the brain scans are all normal... and this little act of following and recognizing my voice, helps me to know that those scans are right.  He doesn't seem empty at all...  he is so full of so much life..... and he came so early.  I love him.

I know bringing home seems so far away, but its also right around the corner.  I anticipate he'll come home with some "extra care", like on oxygen.  That's okay.  I can handle that.  I just don't want him to have an episode here at home.  I cant imagine having to give my baby CPR.  That is what I have high anxiety over.  I know they wouldn't release him if they believe he could have an episode like that...  I have to stop thinking about that.  He's going to be perfect... he already is.  

I really wish I could capture my view of him and his profile....  I keep trying to get a picture of it, the perfect angel and all.... I just haven't been able to.  I will keep trying though, I think his beauty would bring you all to tears. 

I cant believe I've used this blog to ramble so much.... Maybe I needed to...  Well, Austin is still doing awesome!  He makes my world go round... along with his older brother and his pretty awesome daddy!  Life is good!

Thanks for all your love, support and prayers.  As always!

xoxo

DRUMROLL.......

AUSTIN WEIGHED IN AT 5lbs 1.5oz TONIGHT!!!!!!!

I just cannot believe it!  I never thought he'd hit that 5 lb. mark before he left.  He's gaining the weight, that's for sure!!!!  I love it!!!!!

Austin got his 2 month shots yesterday.  I held him and he only "yelled" out briefly.  He was so good... I told him how very proud of him I am every day!   He is so strong!  He had 2 small episodes and 1 bad episode last night.  The doctors said they watch babies closely for 24 hours after shots, because they do have apnea spells after having shots and are very confident that the spells or episodes were a result of his shots.  They did not window him today, instead gave him a day of rest and relaxation (they call it recovery, I prefer it to be called relaxing-sounds less medical), and will window him again tomorrow.  We are definitely on the right track. 

Many blessings for 2012~

Thank you, as always, for your continued thoughts and prayers!  BIG things to come for Austin!  He's awesome!

Quick update

Sorry I have not been back since Sunday.  Austin didn't have a great start to 2012, but he's still trucking along.  He had the episode I last talked about.  Later in the day, he showed major signs of being overworked.  He was breathing so quickly and "pulling" or retracting while breathing.  His blood gas came back good, which was great news.  The doctor still ordered an x-ray, which showed no change.  (In other words, his lung damage hasn't worsened, nor has it gotten any better).  The lungs did look a tiny bit wet, so Austin did a round of diuretics. 

All week Austin has been resting and steadily gaining weight.  He has still been hanging out at 30% FIO2's.  I kind of poked around at the doctors to get their views of all of this.  I gather he'll be here until most likely the end of February.  He still needs to go through the windowing process of the nasal cannula (which is minimum 13 days, if he sails through perfectly), and after he is comfortably on the nasal cannula permanently, he will still need to learn to eat.  He is 35 wks gestation.  His doctor said 42 weeks gestation is a good goal for a timeline to have him home.  On average, 26 wkrs are in the hospital until gestational weeks 40-42.  I also gathered that because he is very comfortable at 30% and doesn't show any signs of handling anything lower at this time, that he may just be a  baby that moves slowly at lung recovery and being able to handle lower oxygen requirements.  (*remember, room air- what we breathe- has an FIO2 of 21%).  Which is all fine with us.  We do not want him RUSHED into anything until he is good and ready. 

The doctors talked about a quick temporary fix to get him on lower oxygen requirements... which would involve a daily diuretic regimen and steroids, BUT do not want to do this route as its the un-natural way of doing things, more toxic and more long term effects.  WHICH I AGREE 100% WITH HIM!  LESS MEDS THE BETTER!!!   He said a lot of hospitals worry more about their numbers.  They would prefer to have lower numbers of babies with CLD (chronic lung disease) so they will pump them with meds to get them through that period and get them home.... HOWEVER, the damage is still their and the babies bodies need to eventually learn to heal itself, so continuing meds to take care of it is prolonging the body from learning to heal.  AGREED!!!  SO we are on Austins watch and he will let us know when he is ready! My sweet pea!  xoxoxo

WELL, this morning I called to see how his night was and let his nurse know I wont be in until later (my car is getting new tires put on and I am starting to paint Austin's room).  She had GREAT news to share!  Austin was steadily at 23% over night and currently this morning he was 23%.  He has not gone above 28% all night and morning!  FANTASTIC!!!!!!

I am going to leave you all with that EXCITING news and go and PAINT his room!  I am so excited!  I hope and pray he keeps it up!

Many blessings to all!!!!!

A Bump in the road

Yesterday Austin did his nasal cannula windowed period twice.  At 5pm and 5am.  He did great at his 5pm session, not so great at his 5am session.  He had many desats, resulting in stopping the session after 30 minutes.  As soon as he went back to the CPAP he did great, requiring only 25% oxygen.  This morning he's been between 25% and 28%.  And then the BUMP.  Austin has been having acid reflux.  This morning his reflux caused him to clamp up (natural reaction of the body to keep from allowing the flow into his lungs), however, he didn't recover on his own and needed to be "bagged" and stimulated.  His face and body grew pale/purple as each of the other times.  He is doing well recovering, not needing higher oxygen,(still at 28%)... but because of this episode, they'd prefer (as would I) to allow Austin a day of relaxation and rest before trying to window him again.  His little body can only handle so much work in one day.

Although I have high hopes and am very confident, this really threw me for a loop this morning.  I really thought we were past these episodes.  Even though the doctors say "its the bodies natural reaction"... what happens if he does that when he's home.  I cant imagine how terrifying trying to give my baby CPR and smacking him around just to get his heart pumping and him to take a gasp of air.  TERRIFYING.  I have so many emotions going through me today.  Not only because of Austins episode...

Please continue to pray for our little baby boy!  He is such an amazing little man!  I love him so much!  I took a lot of really great pictures yesterday.  Here is one to make you smile!!!! Enjoy.... and

HAPPY NEW YEAR!   Here's to a wonderful 2012!