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

Sunday, February 26, 2012

March for Babies (March of Dimes)

I have created a TEAM for Austin to walk in the March for Babies to help to raise money for research to help prevent premature birth.  I am asking for a small donation from all who are supporting my fight!   I know personally the emotional battle of watching your sweet little baby struggle just to keep on going.  It is not easy, and if I can help to prevent one family from having to go through this, I have moved mountains!  I am investing whole heartedly into helping to raise awareness! 

If you're interested in donating, please visit my teams page..... any amount helps!


When I say I have invested whole heartedly, I mean it.  I will get more awareness out there!!!!  I am one of the pregnancies that had problems, and when asked, "why" the answer has always been "by chance".  If there was something out there that could have pormised Austin more time in utero....  if.   Thank you from the bottom of my heart for your generosity.  Many thanks from my enitre family!!!!

Thursday, February 23, 2012

16 weeks old.... 9 pounds

Austin is doing so well.   I loved hanging out with him today.  He is so content.  He loves to just hang out and watch his mobile or watch what every one else is running around doing.  He's a little nosey!  :O)

He is 16 weeks old today.  That is so crazy to me!  16 weeks.  WOW.  His weigh in is 9 pounds!  ha ha!  He is so big he has out grown the NICU's largest blood pressure cuff.  They needed to get one from Children's Hospital.  He is so chubby!!!!  I love his chubby rolls!

Austin has sure done a number on his face.... he is constantly trying to "rip" everything off of his face.  He has had enough, however he requires those tubes to be taped to his cheeks for food and for oxygen... if only he understood that.  I clipped his nails today, but still had to put on mittens to keep him from scratching his poor cheeks.  Chunks of skin, just digging underneath and pulling.....  :o(

My little, chunky love is doing so well.  I feel like his time has come!!!  He is very comfortable at 3L flow and they will try to move him to 2L either tomorrow if he has a great night, or early Saturday morning.  As long as he takes well to the change, we will introduce him to the breast this weekend!!!!  That is HUGE!!!  I am so excited, yet nervous as well.  We start with a "dry" breast (pump first) and let him just get used to it and learn to latch.  I hope he does well!!!!  These are such HUGE milestones we are coming up on.  I have been waiting for this moment!!!!

Last night, my older son, Drew, and I face timed with my husband and Austin.  This is the first time Drew was really able to see and talk to Austin awake.  He read him a book.  It was cute.  He would read a page and then lift up the book to show Austin the pictures.  He also said Austin's bed time prayers with him before the chat ended.  After wards he commented that he "thinks Austin liked the book!"  AND I AGREE!!  He was very interested in this "new" voice!  It was a very special moment!!!!!!

I still cannot believe he is 9 pounds.  So funny....

Many "thanks" to all of you for your continued thoughts and prayers!!!


Tuesday, February 21, 2012


Austins echocardiogram was yesterday, 2/20/12.  I sat in on the echo, and he was a little bit irritated.   We were able to get him calmed down for about 5-10 minutes before he'd squirm and become irritated again, and then another 5-10 minutes.  This is not an invasive procedure.  It is simply an ultrasound of the heart.  The echo, this time around, was only about 30 minutes long. 

I received the results while at my older sons basketball  practice.  His last echocardiogram showed his pulmonary hypertension at 36% and this time around it had risen to 60%.  The resident I was talking to didn't have very much information for me about this.  I was extremely nervous, upset and really, confused.  I wasn't getting my questions answered enough to feel good, or bad for that matter.  Feeling unsure is just as much of a panicked feeling as any.  I sent my husband down to the hospital with loads of questions and stayed through my sons practice, trying to keep face. 

I knew that last time the doctors had told me they were impressed that Austin was only at 36%, with his CLD (chronic lung disease) and that it was not a number in which they would want to intervene.  He said that they have babies in the 60's 70's and 80's and those are numbers in which they would intervene.  So my immediate thought was OH NO.  His number was 60% now.  (All in all what this means is that when you have pulmonary hypertension -high blood pressure of the vessels surrounding the lungs- that your right side of your heart is working harder the the left, as the right side is in control of your lungs, and may become enlarged)  I was so upset.  Does this mean his heart is enlarged??  Does this mean we have to STOP the weening process to get him off of the oxygen?  Does this mean my child is in immediate danger of respiratory or heart failure?  Does this mean his chance of survival has changed???PLEASE TELL ME... what does this mean?  My only answer was that it would be discussed in the morning rounds.  GREAT, now I have to go all night without knowing.

My husband called me as soon as he talked with a doctor. He was able to get some "on the surface" answers, but I needed to dig deeper.  She told him last night that its not the direction they want to see the numbers go, but that its not emergent that they react.  She said the attending would evaluate Austin and decide a route from there.  The medicine that they would administer is Sildenafil (Viagra).  It relaxes the blood vessels.  The side effects are eye and vision problems, and some swelling.  I do feel better once I talked to my husband, but I need to get to rounds in the morning.

Fast forward past the negative thoughts, flood of tears and discouraged feelings, and restless night.... I get to rounds as Dr. A is explaining to my husband that the numbers are just numbers.  He said he would NEVER hang his hat up on numbers alone.  THE BABY MUST BE SYMPTOMATIC TO REACT.  Bottom line.  After consulting with a neonatal cardiologist to make sure he is correct, he explained that the percent of pulmonary hypertension isn't always so cut and dry.  There can be many factors in the number.  For instance, his HR was higher this time around bc the last one he was zonked out asleep, and this time around he was irritated.  He is older and more alert now, ETC.  He said that Austin's pulmonary hypertension's cause is because he has CLD.  This isn't a situation where they do not know the cause. AND, since CLD causes pulmonary hypertension, they treat the CLD.  With time, growth and lung maturation, the CLD will improve and so will the PH.  He just needs time.  Other than the PH, he has a great heart.  All valves are closed and there is no shunting.... his heart is not enlarged and its doing just fine.  He said we would not administer a medicine we know for sure has this and that side effects, but we do not know for sure, confidently that it helps with PH alone.  So, unless he becomes symptomatic, and shows us he needs something to "change", we're not going to fix something that isn't broken.  In the next few years when his CLD is getting better, so will the PH.  And if not, we can explore treatment options then.  Unless he shows us something just isn't right, we will continue on the path we are on.  He is weaned to 3L today, and as of lunch time, is handling it well.

I felt 100% better after rounds today.  I feel so confident in his doctors!  I am happy with that.  When they say he needs time, they mean years.    Austin will get there!  I have seen him make strides of progress since the day he was born!  He is a miracle and I have to remember ALWAYS, GOD IS GOOD.  He is a rewarding GOD.  He is a loving GOD.  He is AMAZING!!!   He will always take care of Austin, and He will allow Austin to heal in the time he needs to do so.  I just need to sit back and be patient and continue to turn to my FAITH when I am feeling so bad.  I have to remember this.... as it is my favorite....  "And the Child grew and became strong in spirit, filled with wisdom; and the grace of God was upon him." ~Luke 2:40 

GOD knows what Austin needs and he has put him in the hands of the right doctors to relay to us what exactly that is.  TIME.  

Again, from every depth of my heart, I thank you all for your continued PRAYERS.  I can honestly say, if I don't look 10 years older than I am, I feel it.  I am worn out.  Exhausted.  BUT I have so much left in me.  I will be good.  Austin will be good.  My family will be good.... because, all in all, GOD IS GOOD. 

Sunday, February 19, 2012

The Latest...

Austin is doing well, although he may have a minor virus.  He has always had a little bit of a gag and cough from his own saliva, but I noticed the other day he was just coughing.  I had several different RT's and doctors take a look at him.  They all said his lungs and airways sounded clear and opened.  They did agree that he had a small, wet cough- did an RSV wash on Austin and it came back negative.  Since Friday, he has been very calm and looks well.  His cough isn't as frequent so that is good.  He is not having any A's and B's and his FIO2's are not going up, so not too worried, just keeping an eye on things. 

Austin has his repeat echocardiogram tomorrow.  They will be checking to see if his pulmonary hypertension has increased or stayed about the same.  Very happy with the last echocardiogram results, so we're praying for great results again!

Other than the "cold" and echo, not much has changed.  Austin still loves his bath!  He loves his mobile and bouncy chair.  He LOVES LOVES LOVES when daddy holds him.  He really does love his daddy so much!  Its neat to see!  Austin is still on the HFC at 4L and a steady 25%-28%.  He weighs 8 lbs 10 oz and is so chunky that the NICU doesn't have a big enough sized blood pressure cuff and is getting some from the Children's Hospital!  He is a chunker!

I have adjusted my goal, because he just will not be ready the first week of March.  My new goal is to have him home by Easter.  That is 6 weeks from today.  I think he can make it by then!!!  Until then, I continue to pray.

Dear Lord,
Thank you for the blessings You have given to me in my life.  I am so happy and thankful.  I pray that You continue to keep Your healing hands upon my sweet Austin and that You continue to give the doctors and nurses that care for Austin the knowledge and wisdom of the best care for Austin.  Please have mercy on him and keep him from any pain and any harm.  Help me, my husband and my son, Drew, to continue to have patience and positivity for the remainder of our journey.  Give us the knowledge to know when we are in need to draw near to You.  Give us all the confidence we need to continue our stay at the NICU and the confiedence when it is time to bring him home.  Lord, let Your WIll be done in our lives, and help us to see all the is Righteous.  Lord, i praise You for Your glory!  In Christ's name, I pray.... AMEN.

Monday, February 13, 2012

My sweet 8 lb. preemie!!!!!

Yes!  You read correctly!  8 pounds!!!!  LOL    I never thought I would see this day-- in the NICU!!!! He is my big boy!  I love him so! 

Austin is doing FABULOUS!!! He really has adapted to the high flow cannula well this time around.  He is currently at 5 L flow, and although the doctors haven't done rounds yet this morning, we have talked on Saturday about going down to 4 L flow today... so we will see!  He really is like a new baby!  He is so comfortable, other than when his belly is full of gas!  He really did not like the CPAP at all!!!!!

Not much has changed in the past week.  Other than getting some Mylicon drops for his gassy belly, I think everything is just about the same.  He is up on his feeds a little more too...56 ml's ... which will probably go up today as well.  They have talked about reducing his caloric intake, they have been fortifying him with extra calories for some time now to fatten him up- which they've succeeded!  They would like to see him gaining steadily, yes, but about 20-30 grams per day.  He gains about 70+ grams a day.  At this rate he's going to be 10 lbs when he comes home! 

My older son Drew is still very anxious about getting his brother home.  Last night, while laying in bed, he asked again, "when is Austin coming home?"   I tell him the truth.  He knows his brother has crummy lungs and that he just needs some more "healing time" for them before he comes home.  I explained the high flow cannula to him and how it works vs. the cpap.  I explained where he is on the flow and where he needs to be to start to learn to feed (2L) and he needs to be to come home on oxygen, and where he would need to be to come home with out oxygen.  I think he "gets it" to an extent.  He doesn't understand why they just don't take all the "tubes" off of Austin and see if he can do it on his own...  :o)   I always encourage Drew to ask questions about Austins care, that way he doesn't feel like he's left in the dark about any of it.

Here are some new pictures of Austin.... ENJOYING LIFE!!!!

My little AUSTIN!!!!

Sleeping soundly!!!

Snuggled up!  (arm rolls)

Hanging out with MOMMY!!!

My big brother ROCKS!!!

I hope everyone has a very HAPPY VALENTINE'S DAY tomorrow and remembers to hug and kiss all your loves!  I know I will!!!!  xoxoxo

Thank you all, for this NICU journey is still going, I am thankful to have had the support I have and continue to gain each day!  Our little boy will be home before we know it... and you all helped us to stay sane!  You're prayers helped Austin, Drew, Scott, and myself, and we cannot thank you enough!  

Thursday, February 9, 2012

2/7/2012.... My due date...

Tuesday was my due date.  Meaning Austin's adjusted age is 2 days old.  WEIRD!!!!  He is a strong 2 day old baby!!!  LOL

I wasn't really sure how I would feel on Tuesday.  So.... I had a spa day!  Four hours at the spa!!!! It was fabulous!  I had a massage, facial and pedicure.  I went home, ate and took a nap.  I then headed up to spend the evening with my sweet baby boy!  He had a spa treatment as well.  We gave him a nice and long WARM bath and then I gave him his relaxation massage and stretches before snuggling him into bed for the night.  HE LOVED IT!!!!!

Austin is doing so fabulous!  He is doing great on his high flow cannula at 6 L, and will be weened in a day or two to 5L.  He is now a whopping 7lbs 14oz and with that being said, the nutritionist believes she can come down on his extra caloric intake- as he is doing well at gaining - OBVIOUSLY!!!   He has steadily been at 25%-28% FIO2's and hasn't had any A's and B's or any major desats since he started the HFC.  He still works pretty hard to breath, but not any more than his normal.  He had his eye exam yesterday and he did well.  His right eye is zone 3 stage 1 (good) and his right eye is zone 2 stage 2 with a notch, so they are keeping an eye on this eye with weekly exams.  If his vessels do not grow out into zone 3, he may not have his peripheral vision in his left eye and if the notch grows and begins to apply pressure to his retina, he will require surgery (laser) to fix this. 

Austin is such a gassy boy... its so sad, bc with the underdevelopment of a preemie, he just doesn't have the muscle mass to help to get things moving along in his belly- thus he suffers with gas bubbles.  He squirms and grunts and then a small little "puff".  Its sad..but I get the best pictures ever......

Gas smiles.....

...but I say its bc he knows his momma's bedside
and it makes him smile to know he's loved!!


I still cannot believe how big he is!  I just never imagined him getting to be so big this early.  I really had thought I'd be bringing home a 4 or 5 pound baby.  LOL   My chubawub!

My chubawub with his wubanub!

Here he is during his due date spa treatment!!!!!!!!!!  He loves taking a bath... LOVES IT!!!

Rub-a-dub... chub-in-a-tub

Cozy - all snuggled up in bed!!!!!

THANK YOU ALL FOR YOUR CONTINUED THOUGHTS AND PRAYERS AND SUPPORT.  I continue to see God's work every day.  Just as I start to become discouraged, Austin shows me that God has a plan for us all... and that Austin is doing just fine!!!  xoxoxoxo

Monday, February 6, 2012

Rough weekend... and a bounce back!

Austin is 7 lbs 4 oz.  He is now 19 inches long.  He will be 40 weeks gestation tomorrow.  Yes, my due date is tomorrow.  I feel okay about it.  I did schedule a spa day tomorrow... I have been having tension headaches and I think tomorrow might be a  little bitter sweet.  I see this sweet boy smiling back at me and it makes my heart melt!  Keeps me positive and keeps me "ticking".....


Austin had four episodes in a 24 hour period this weekend.  Very weird... he hasn't had these A's and B's in so very long.  It really difficult when you ask a doctor WHY and the answer is "WE DON'T KNOW" and when you ask WHAT IS THE PLAN and they answer is "We're trying to figure that out too".    I love Austin's doctors though.  They have established a good plan of action for him for the time being.  He is back on the high flow cannula 24/7.  Hoping and praying that he takes to this well.  He needs to get off of the Cpap.... he is getting too old for that dependency.  They also checked his hematicrit and retic and the numbers were trending in the right direction, no need for a trasfusion. (good news)

Austin's baseline for his respiratory rate and his work to breath is higher than most babies.  He has some crummy lungs and was so extremely premature that they really need some time to heal.  AND this type of healing doesn't happen over night.  Patience is hard once you're at the 3 month mark.  But he is doing well.  He is such a fighter!  I can't wait to share with him stories of his strength.  I am so proud of him!  My older son Drew is already protective of his baby brother.  The brother he has yet to meet, and its so heart warming to me!  I say stuff like "look at his fat cheeks"  and Drew immediately says "don't make fun of my brother!!!!".   :o)

My husband and I are really becoming anxious for Austin to get well and come home, but are trying to stay in the now as we always have.  He needs more time!  and that's just fine! 

Many thanks for your thoughts and prayers.  Without all of you and your prayers, I'm just not sure what I would do!  THANK YOU from every depth of my heart!!!!!!

3 months old

Friday, February 3, 2012

Splish splash.... give me a bath (3 months old)

(comparison picture at the end of this post)

Austin is doing Excellent!!! He is now windowing a few times a day. t He started at three hours on the nasal cannula and six hours on cpap. He handled it very well- steadily between 25%-28%. I really feel like his time is coming! He really deserves it! I was so lucky and was able to give him his first " in tub" bath on Saturday evening January 28. He was irritable all afternoon and so we weren't sure how he'd like going into a baby tub... but he LOVED it!!! So did mommy!! Such a special memory!
Austin LOVES his bath!
Austin finally hit the 7 lb mark.  I never thought it to be true!  Two days ago.  Seven pounds even!  I never in a million years thought he'd hit that mark!  YAY, baby Austin!  He has been put on an extra protein supplement, to help him grow in length.  He is 17 3/4" long... short and chubby.  Haha.

Austin has grown so much.  He knows what he likes and does not like.  He lets us all know immediately that "yes this is working" or "nope, try again".  He isn't shy in that sense one bit!  He loves his bouncy seat on vibrate and would love to spend the entire day in it!  He loves to here music on his mobile and he loves his soothing sounds lamb.  He also loves to hear his mommy and daddy talking.  As soon as he here's us he is looking to see that its indeed us! LOL 

Austin's window time was lengthened yesterday to 6 hours on cannula 6 hours on Cpap.  His first "session" he made it to 5 hours before they decided to put him back on Cpap.  He was pulling and working a little more than they felt necessary.  However, his next session went GREAT.  SO that is excellent news!  I'll be heading up to see him shortly!  My little buggaboo!  He is such a doll.  My homecoming goal still remains at the first week of March, and I think he will make it! 

His hematicrit count (red blood cell count) was good on Monday... 29.5   and  his retic count (immature cells maturing) was 5.8   EXCELLENT!   His body is doing what its supposed to be doing.  All good signs!

Here is a very sweet sweet picture of our Austin.  He is cuddling with Daddy during his window session.  Such a gorgeous baby, he is!

OKAY OKAY.... its "look how much I've grown" time.....

Remember when..... he  was born at 828g = 1lb 14oz.....  so frail, and so tiny...?  I remember the experience, yes, but I cannot visualize it until I see the pictures.  So many small babies are born and I think "oh my, they're so little" and they weighed more than my Austin.  TRUE.  I forget how incredibly small.... 13 inches head to toe...

3 days old                                                      3 months old