is something missing?!?

Collin has had quite the busy day today!!  He went 48 hours eating all bottles, so he got his feeding tube officially pulled and he has been doing pretty good with all feedings since.  The schedule for feedings used to be every 3 hours and sent through tube if not finished.  Now its every 2-4 hours with an amount to encourage him to eat.  Most of the time he's been sleeping the full four hours, but he's still eating a decent amount :)   We also found out today after inspection that the flow on his cannula (@ 25mls pressure oxygen) was actually broken!  So he's been on room air for who knows how long..so he was able to get off oxygen officially as well!   This is the very first time we have ever seen his face 100%, it was so awesome!!!!   We knew he had dimples, but you can see them so well now and he's got a cute buttony nose :)  We couldn't be happier!  ..oh and p.s  He got another eye test, and a hearing test.. happy to report NO issues!!  We are so lucky to have our little boy, so proud of his progress.

Collin the thumb sucker!

Collin has had a great day!  His crib mattress up until today was on an incline to help with breathing and reflux.  He was switched to be able to lay flat, which may not seem like a big deal, but it sure is!  He is doing very well, and was able to drop cannula flow down to 25ml's of pressure which is the lowest setting!!!  He did have a little spell while eating his 6:30pm feeding, which is okay because he needs to get used to the new settings. They upped his oxygen % for the rest of his bottle and afterwards he was doing well!  We just love the way he searches for his thumb, so we finally snagged a video of the stinky little bug :)

38 weeks gestation

Collin is now 12 weeks 2 days or 38 weeks gestation corrected age.  Its hard to believe that we've known Collin for almost 3 months and he is still not due to be born for 2 more weeks!   We truly have been blessed with such a wonderful, miracle baby!!
Collin has faced many challenges, such as his grade IV bleed with hydrocephalus on his left side. A PDA-ductus not being closed in his heart, sepsis in his first week, pneumonia, chronic lung disease, at least 10 transfusions (I lost count), and multiple hernias, that will need surgical correction sometime in the next few months. He even holds the NICU record for unplanned self-extubations.  All that aside we are EXTREMELY lucky!  It's not quite fair to compare Collin to other micro preemies because everyone's story is different, and not all babies are the same... But, I've read a few other stories/blogs lately and there is a whole world of challenges that Collin has never had to face, and it's a miracle.

I've been reflecting a lot lately over what we've been through the last few months and wanted to share some of the feelings that I never talk about.. It's time to get it off my chest.  First and foremost I LOVE my son and I have cherished every moment with him.  But I, of course have struggled with some sad emotions over the last few months, and I'm sure some of the feelings will take awhile to subside.

The first thing is the anger I have felt, the "why did this happen to us" feeling, the guilt for the unknown reason for why Collin was born so early.  There is no known medical reason as to why it happened, and the Dr.'s have assured me it was nothing I did wrong.. But I can't help but feel sadness and guilt wondering if there was anything I could have done better (eating better, exercising more.. something, anything).  I have had very sad, and angry feelings over the challenges we faced to become pregnant in the first place. Again, it could have been a lot worse such as in vitro and things.. but, I dreamed of being pregnant and having a baby so much, that dealing with the emotions as to why I could not become pregnant for over a year were very challenging. Having to see a specialist and run many tests, and fertility drugs was a difficult time.  Knowing there are people out there not suited to be parents who are on drugs hurts. Or, people becoming pregnant by accident and having abortions out of convenience was something that angered me deeply.  During the year we were having difficulty I knew two people that made that choice, and it killed me that they knew how desperately I wanted a child, and how many wonderful people there are in the world that would have adopted their child. Their choices hurt me, and made me question why these things happened, when I could not, at the time have a baby of my own.  Getting this positive test was best feeling!
















Second, I know that people were trying to make me feel good when he was born by telling me how amazing I looked after his birth, but the truth is I didn't want to hear it.  I hate the fact that I was totally fine while my baby was being kept alive by machines.  I wish I could have gained a million pounds, gotten tons of stretch marks, been uncomfortable, swollen, and tired, just so he could be healthy.  I don't think I will be able to look at a pregnant women without feeling jealousy and anger for awhile.  They just don't realize what a blessing it is to have a watermelon sized belly..I never really got that far, I had just began to show..

 Like I said, I am so happy to have known Collin this whole time and wouldn't take back any of our memories together.  But, I've had to (how the nurses put it) Grieve the loss of my pregnancy.  I never got the chance to do fun pregnancy things like get a 3D ultrasound, get maternity photos taken, or have strangers rub my belly in public and ask when I was due.  I even had a baby shower, not pregnant!  People really take for granted these amazing moments, easy pregnancies, safe deliveries and healthy full term babies that can go home after 2 days.  They don't know the difference between seeing your baby immediately or having to wait 10 hours to meet him. Or being able to hold your baby after a few moments, or having to wait 5 days.  Simple things like breathing, eating, changing a first diaper, wearing a first outfit, and having a first bath can be taken for granted, while these were MAJOR milestones in Collin's life.  This whole experience has truly changed my view and made me grateful for the little moments.  I hope in all of this I can help people cherish their children, just that little bit more.  Hold on to your baby and love them!!

The third thing is that it has been very difficult for me being in a service position, watching my customers with their children. They act like they are a burden; horrible, rotten children.  I have even witnessed a mother smack her child, in front of me, for no good reason..I was horrified.  I hope that I will never take Collin's life for granted and will be able to parent him so much better than that.

Lastly, I know that people mean well, I appreciate everyone being interested in Collin and his progress. But, people don't realize that sometimes the last thing we want to hear is "When can Collin come home?" It is a difficult question to answer and it is constantly on our mind.  We want that more than anything.. But, sometimes the question adds salt to the wound.  Collin continues to progress and is such an amazing little boy.. He will come home when his Dr.'s feel he is ready.  The hardest thing to explain to people is that just because he is now at a healthy weight, and at some point in the near future he will be able to come home does not mean he's all better.  We still have a fragile child, who still has a long road ahead.  There are surgeries planned, early intervention, physical therapy and possible speech therapy, and more possible scenarios for our future.  He will not be able to attend a day care, or go anywhere there is large groups of people (and germs!!)  He will be susceptible to all types of sickness, especially respiratory.  The common cold could have him headed back to the hospital for another extended stay. Coming home in the winter months is probably the scariest thing in the world.. the flu and RSV are out there!

All this being said I want to sincerely say "THANK YOU" to everyone who has continued to follow our blog and leave us messages of hope and love.  I will continue to work through my yucky feelings about the situation and enjoy this road for what it has been, because I love being with my baby!

Here is our most recent family photo :) We are so happy at how far we have come!  Thanks for reading..xo

Just Hangin' out!

Collin is doing really well...He's really just been hanging around and growing :)   He weighed in at 7 lbs. 10.6 oz today, he's continuing to do well with feedings.  He still skips here and there, but he is finishing some bottles!  His cannula is still at 50 mls of pressure and oxygen percent is sneaking down under 50% now :)  working hard on getting him off a cannula for good!!  There is a possibility that he could come home on oxygen but with a few weeks left until 40 weeks gestation, we are hoping he can pull it off!   Here are some recent photos of the chubby little guy :

7 POUNDS!

With 3 more weeks until "full term" ..Collin is weighing in at 7lbs 1 oz and he is just over 19 inches long!  We have fully come to the conclusion that this baby would have been MASSIVE :)   He is still doing great on the new cannula with only 50mls of pressure. He's holding his own keeping his oxygen up over 90% most of the time with less and less events lately.  He did get his feeding tube back in because he was way too tired to eat a few times after his eye exam.  But overall he's been eating great, the last three days he was 90%, 100%, then 80% yesterday after the eye exam.. so not bad at all :)  His weight gain has been steady so they've dropped his calories back down to only 24, but his volume of milk and formula went up to 60mls (2 oz) every 8 hours.  Right now he's getting every other bottle formula, then milk, until supply runs out.  It was very emotional for me to let go of pumping, but i've officially quit.  I truly wish we could have gone longer.. but it was way too hard for Collin to breast feed.  Bottles let the milk out much faster and its easier for him.  On Tuesday he was 11 weeks old and I breast fed him for one of first successful times, but knew it was time to let go.  My supply was pitiful :(  pumping constantly and getting only 2 oz for the whole day!!  I would never have been able to catch back up to that hungry boy unfortunately..BUT the great news is he doesn't seem to care.. he chugs the formula and has no issues digesting :)  

Collin is SO big he is officially in newborn sized clothes..bye bye preemie baby!! He truly looks awesome and fat! hehehe

Eating tons of bottles!

Collin is doing amazing!  He has taken every feeding for 24 hours!!!!  He was due to get his feeding tube changed out and instead of putting in a new one..they left it out! :)   There is a big possibility that he may need it back because it is tons of work to eat and eat and eat!  Its very easy for them to put a feeding tube in, so not a big deal if he needs it back, but for now we are celebrating that it was of no use to him for an entire day.. a big milestone!
7 lbs is our next milestone..and he will most likely reach it by tomorrow seeing he was 6 lb 14.6 oz today :)

We've been mostly just hanging out and enjoying snuggling tons and visiting with Collin's admirers the last few days.. everything has been going so well, most things to come are still a waiting game for him to get even bigger and stronger.  On thursday Collin's corrective age will be 37 weeks gestation so we still have 3 or 4 weeks left, possibly more depending on a few things, but we are on the right track and very excited about it!

weekend update..

Collin's such a big boy!  He has grown out of his preemie clothes and is now wearing newborn size :)  He weighed in at 6lb 10 oz today and is still doing well with feedings.  The air pressure on his cannula got dropped down to 1 liter, which means he's almost ready for regular oxygen and not the high flow; which will be that one step closer to off of it completely :)   He got another bath today and he seems to enjoy them a lot!  
At home Mommy & Daddy have been busy working on the nursery.. we'll post pics when its ready!

What a difference 8 weeks makes...

We were talking a lot today about all the changes Collin has been through and how much he has grown over the last 2 months of his little life..and we decided to give you all a visual and some stat changes... I picked the day he got his first sponge bath, and today when he had his fourth big boy bath!

Then, he was 15 days old.. weighing in at 2 lbs. 6.5 oz.. He was intubated, and receiving 9 ml feedings every 3 hours through a tube.
Today he is 10 weeks and 1 day old.. weighing in at 6 lb 4.4 oz and eating from a bottle 47mls (Thats just over 1 1/2 oz every time!)

AND here are our before and after pics :)   He loves to snuggle with his rhino after bath time hehe

Collin needs his "Coffee"

Collin was taken off caffeine on Friday, but yesterday and today he has had multiple breathing spells, and drops in heart rate.  They started him back on the Caffeine, and he has been doing better since.  He has been working really hard lately to eat his bottles, and he has been wiping himself out.  He probably just needs a little more time to develop the whole 'remembering to breathe thing'!
An eye exam was done today, he is still looking stable in development and they will check back again in a week or two...
Collin weighed in at 5 lb 14 oz today and was upped again on feedings to 45 ml's.  His frozen stock is running out quick, because thats equivalent to about 12 oz a day.. I will keep going as long as I can, but he will have to get supplemented with formula to make up the difference.  He is such a hungry boy, and since he doesn't actively breast feed, plus stress of things and going back to work etc etc.. supply has been dwindling over the passed few weeks.  All of the nurses and lactation consultants have been supportive and let me know that a lot of NICU moms give up very fast or don't try at all to pump.. and the fact that he's had nothing but breast milk for over 2 months is amazing!
We also have started working on getting Collin's nursery ready.. this last month or so until he can come home will probably sneak up on us :)

Collin has also been pretty happy during waking times, and he smiles a lot!!  His Grammy took this picture of him laughing at mommy :)  :)

ink feets!

Collin is now 35 weeks gestation, and they re-did his foot prints.... what a difference almost 10 weeks made :)   He's been quite cranky/gassy the last few days, but was much better today.  He's still doing pretty good with bottles, he usually eats about half and sometimes all of it!  He's now getting 41ml's breast milk with the added 28 cals. He now weighs 5lbs 10 oz!!  AND he's discovered his thumb..he's been really enjoying sucking on it lately :)  

"when can collin come home?"...

So, Jason and I want to clarify a couple things because a lot of people have been asking lately when Collin can come home, because he's now over 5 lbs...  Back in the day they used to send babies home when they became over 5 lbs.. but that is not and will not be the case with Collin.  We were told from the very beginning that he will not be able to come home until atleast his due date.  Yes, weight does matter too... but the real things that he needs to accomplish in order to come home are

1.  Collin needs to be eating full feedings, every feeding, without any issues.   He is doing well on the bottle and occasionally tries breast feeding, but he still is not perfect and has trouble finding the energy to finish.  He often gets feedings or partial feedings through a feeding tube.

2. Collin needs to be able to breathe completely on his own without assistance.  He still has a canula with oxygen, and continues to have drops in oxygen levels and heart rate when he forgets to breathe.   They continually watch his monitors, and the "rule" is that he needs to have perfect breathing with no drops in rates for 7 consecutive days.  Even if we are on day 7 and he has a spell, the count starts over

..We of course are looking forward to the day he can come home, but we also know he is not ready, and he's in the best place possible.  He definitely looks a lot healthier lately and he is getting stronger, but he still has awhile to go.  Hope this clears some questions up for you guys.. feel free to leave a comment on this message if there are any other questions we can answer.  We are thinking he still has about a month to go.. so we look forward to February.

New Year's eve!

Collin would like to wish you all a happy new year!!   

We are very excited to see what this new year will bring... all of the mile stones Collin will reach..and especially bringing him home in the near future :)  A special thanks to everyone who has kept up with our blog, sent love, prayers and even gifts to Collin!  We truly appreciate everything that was done for us  this year and we cant wait to see what 2012 brings :)   Happy New Year!!!!!  xoxo

p.s  Collin reached 5 lbs today!!