Happy Halloween!

Since my pumpkins have grown so much over the last 10 days, they don't fit in their Halloween costumes any longer! So, that said, they are dressed up as "JD & Cole" tonight instead.

JD and I are manning the door this evening - passing out candy to the kids and beers to the "big kids". We have such a fun neighborhood. I can't wait until next year when we are buzzing around the neighborhood with the boys in a wagon - our first REAL Halloween with our own kids. I was reflecting earlier on how much fun Halloween used to be when we were kids. But, the one thing I remember not liking were those cheesy plastic costume masks that we used to have. Remember the ones that used to come in the box with the cheesy polyester one piece suit that tied in the back? Remember how hot they would be on your face and you would always sweat like crazy underneath? And remember the tiny slit they had in the mask for the mouth? Was I the only idiot who consistently cut my tongue on that thing trying to stick my tongue through the hole? Ah, those were the good ole' days. Costumes are so much better these days. Now I sound old, don't I? Ugh.

I was holding my breath this morning when I woke up too because traditionally last night was mischief night. Thank goodness that tradition has somehow died out, at least around our neighborhood. I didn't see a single square of TP this morning in the trees - as irritating as it is to see, what fun it was to "decorate" the neighborhood incognito.

Here's a picture of JD helping me pass out candy - as you can see, he's pretty interested?!?!?
Hope everyone had a safe Halloween and your kids are not too crazy with all of the sugar. On second hand, what fun would Halloween be without a sugar buzz and a meltdown to follow right before bed? Hope all of your little pumpkins, ghosts and goblins got lots of loot - and lots of good stuff for you parents to eat too!

37 Weeks (corrected age)

And almost 9 weeks, real age! And we're still making great progress! Cole has been without his oxygen for over 24 hours and breathing like a champ. He's still bottling well - but still only at every other feed. If he continues to do well through the night, my guess is that they will increase his bottle feeds to every feed ~ but leaving his tube in for a short while to be sure that they have a way to feed him if he gets lazy for a feed or two. It's so tiring for them to learn how to do 8 feeds per day so it takes a few days to build up a tolerance and save the energy.

Here's a picture from today - I swear, he changed overnight! We're hoping he hits 4 pounds tonight - he was 3lb, 15oz last night.

Cole's Rockin' & Rollin' tonight!

At the risk of getting too cocky, it is with cautious optimism that I tell you that Cole is currently off of his oxygen and holding his own very nicely. They are not making any promises but we've got our fingers crossed that he'll be able to last through the night without having to have it back. We'll see. In any case, it was a beautiful sight to see my little hero without his nose tube for the first time! The only tube left is his OG tube for his feedings. And we're working on getting rid of that one too. Then he's HOME FREE!

He's rather handsome I think! Can you believe how plump he's getting? Now we are really starting to see a resemblance between the two boys. On that note, time for bed. Night, night.

New Pics

Here are a few new pictures;

Cole when he was wide awake for one of my visits yesterday;



JD's a happy camper in his swing!

Weekend Update

We're all doing great - it's been nothing but fun having JD home! We've been shuffling between home and the hospital all weekend which is a bit hairy but we're doing fine with it. The nights have been easy so far - JD sleeps right through to his next feeding. He's spending more and more time awake during the day now which has been so much fun. His first pediatrician appt went great - he was up from 5lb to 5lb, 5 oz. The doctor said he looked great. I took him on another road trip yesterday to Grammy's house for a few hours while I went to visit Cole. She loved having him and he did great. He's an easy guest for now - just wait until this time next year though - they will be wreaking havoc all over Grammy & Grampy's house!

Cole is doing very well too - he's up to 3lb, 14 oz now! He's going to hit 4 pounds in the next day or two. He's still having some trouble weaning off of his oxygen but they are taking his nasal canula off for a little while each day to see what he can tolerate. He's eating bottles 4 times a day, and being tube fed 4 times a day. They will hopefully get him to have more bottles later this week as he gets better at it. We'll go see him again tonight and give him another pep talk. I'm hoping that when he hits that 4 pound mark, he's going to start sailing along and will be home in no time.

That's about it for now. All is well on the Licameli home front - we're just waiting for our other little guy to come home. Today is a football day for Daddy & JD - somehow I knew it wouldn't take long!

A Preemie's Bill of Rights

Another one worth sharing. This is awesome; I just love it. If interested, you can order framed copies. I plan to order one for our local NICU. They practice each of these to their fullest potential and I feel so fortunate for that. Our kids could not have had any better care. Let me know if you're interested and I'll give you the info.

A Preemie's Bill of Rights
by Read McCarty

I DESERVE to be understood and treated as the Individual I am. I deserve to have my language of cues and signals understood by you, my caregiver. My grimaces, hand stretches, frowns and hiccups are as meaningful as any words, but delivered in the only language I know.

I DESERVE your recognition that I may be completing many months of my physical and neurological development outside the protection of my mother's womb. Even as you give me he life sustaining care I so badly need, as much as possible I deserve to have the boundaries, quiet, warmth, gentle stimulation, dim lighting and fetal positioning I would have in my mother's womb.

I DESERVE periods of uninterrupted quiet so I can use my energy to grow and not hopelessly trying to overcome excess light, noise and overstimulation.

I DESERVE the warmth, tenderness and comfort of being held by my parents as soon as they feel comfortable and when my medical condition allows.

I DESERVE the positive energy of love...your kind thoughts and words as you care for me...my father's soft touch...my mothers gentle words...a volunteers quiet rocking. I deserve these things because in your heart you know their worth even though their absolute clinical value may never be proven.

I DESERVE your understanding that what is normal and routine for you, as my caregiver, is abnormal and frightening for my Mom and Dad. So please answer kindly no matter how many times they ask the same question. They deserve your support and understanding and the support of other families as they go through the roller coaster experience of the NICU.

I DESERVE your recognition that my parents are an integral part of my caregiving team and should be allowed and encouraged to the best of their ability to help care for me during my stay in your hospital.

I DESERVE your understanding that part of your job is to help my family bond with me as we learn to trust each other in preparation for my homecoming.

I DESERVE the continuity of care from the NICU to my home...from my neonatologist to my primary care giver...so together my family and I can reach our full potential.

YOU DESERVE MY THANKS AND RECOGNITION I AM HERE BECAUSE OF YOU!

To the fellow NICU parents...

Thought you guys would apprciate this. Every single one of these is so true!

You Know You're The Parent of a Preemie When...

1.You use strange initials (C-PAP, CCs, NICU, NG) when discussing your child.

2.You actually remember how many CCs make up an ounce.

3.You count his weight in grams.

4. The skin on your hands is peeling from washing so often!

5.You hesitate when someone asks his/her age, but you know exactly how much he/she weighs!

6. The answer to "How old is your baby?" is a story 30 minutes long!

7. When someone asks his birthday, you reply, "Which one?"

8. You start to understand some of the things they say on ER!

9. You turn into Kung-Fu Mom when someone tries to touch your baby.

10. You attempt to measure just how much spit-up he/she just had before you clean it up!

11. You know how much he weighs before putting him on the scale at the doctor's office

12. You cry at Maternity Ward and get mad at Baby Story.

13. You see a 7lb newborn and say "Wow! She's so BIG!"

14. Your baby is months old before he can even go to the mall.

15. You have never explained why your baby is on an apnea monitor.

16. When someone says how tiny your baby is, you argue that he is huge -- and to demonstrate, you whip out pictures of him in NICU.

17. You do a health check on people when they come to your house to visit .

18. You make people wash their hands before going near your child.

19. You want to scream when someone says that she just wants to have this baby now - at week 28, 32, or 34.

20. You are so amazed when someone actually tells you your baby is big for his age!

21. You tried to find a place to buy newborn size diapers in bulk.

22. You called half your relatives when the baby grew out of their first pair of pajamas!

23. You never take your child for granted.

24. You worry about RSV season and it is still weeks away . . .

25. You know what "RSV" stands for.

26. You donate his/her tiny clothes to the NICU and marvel that they seem so small - when they were too darn large!

27. Your son gets a simple cold and her doc sees her within the hour!

28. People say, "He CAN'T be __ old...he's too little!"

29. It has taken them 5 months to grow INTO newborn clothes!

30. You pick up 2 pounds of ground beef and think that your baby was born at the same weight

31. You buy "Purell" in bulk

32. You can stare at your baby for hours when he sleeps

33. You know about oxygen tanks and regulators more than the company supplying it to the airplanes

A Mom's Life

I'm speechless. What a day today. It is so much fun having my baby JD home ~ we had such a fun night last night and fun day today. We did much of nothing but I watched him sleep a lot in between feedings and diapers; my heart has never been so full. Thank you to everyone for your wonderful messages. You all never cease to amaze me with your outpouring of love and support for our little family.

Both of the boys are doing great today. JD is happy as a clam and Cole had another good day today too. I still have a heavy heart since he's not here but I did get a chance to spend a couple of hours with him today and plan to go back tonight for his 8pm feeding. Daddy stopped on his way home too so he got lots of visiting time in.

We have our first pediatrician appt tomorrow for JD. They require the babies to be seen by their pediatrician within 48 hours of discharge. I can't wait to bundle him up and take him out again! He's sleeping soundly right next to me on his boppy lounger - what a great invention that thing is!



So, yesterday was a great day, once we got things rolling for discharge. It's an amazing production to get out of there. Aside from the fact that you have to be discharged at the nurse's convenience (much like any other hospital discharge), they had to prepare the medical records for us to take to the ped, re-teach us CPR, go over the medication schedule and dosages, finish his immunization record, make sure our car seat was "approved" etc. They really go the extra mile to make sure that parents are fully trained, informed and comfortable before taking their babies home. I think that is the consensus with the entire staff at AAMC - NICU or not. Once we got the go ahead to prepare to leave, we dressed our little guy in his going home outfit and started with our goodbyes. Many of the nurses came in to say goodbye to JD - he's considered one of the long termers so they all really were happy to see him be able to go home. It was a total fiasco wheeling out of there (car seat gets wheeled down in the baby bassinet). Poor JD was on overload with all of the nurses right in his face. It was really cute. We got home and I showed him around his new house while he slept.

Daddy did great with him while I visited Cole last night - that's what you get when Daddy is so involved in the care at the NICU. They know what they are doing when the babies come home - well, sorta. But it's a great arrangement for us in the evenings so that we both have some time to see Cole. Speaking of which, I just returned from hanging with Cole and he's doing really well tonight. We're still a week or two out from homecoming but every day is a milestone! Hoping for some more weight gain tonight - he's almost to FOUR pounds!

Here are a few more snaps of JD from today. We tried out all of the "baby goods" today. Some more fitting than others...

This is our "infant to toddler" highchair, without the tray of course. So apparently a preemie is far from an infant. He's swimming in it! Not for long, I'm sure...



Life is good!

Homecoming Day!

One down, one to go! We made it home! JD loves his new home, or at least he appears to. He's rather cozy and has slept since he got home.



Here are a few pics from today. I'm short on time as I'm prepping the 8:30 feed for Daddy to do while I run up to see Cole at the hospital. Cole is doing great by the way - he's got some added incentive now that his little brother got to go home. Enjoy and I'll post some more details tomorrow.

Here is JD's going home outfit. This is the sweater jacket that Mom made for me when I was born, which I wore home from the hospital. Toby (my brother) also wore it home, as did his daughter Emily a little over a year ago. What an heirloom. And a beautiful one at that! Grammy's knitted things are the BEST!



I'm not so sure about this carseat idea Mom?



Ah, now that's a little better. I can get used to it I guess.



Mommy and Daddy are so happy and proud to have JD home finally! Despite the tears on the way out of NICU, the nurses made a BIG fuss over JD's departure.





And by the way dear friends, all of the comments on yesterday's entry were so heartwarming. You guys are truly the best!!!

We're having a slumber party with JD!

WOW, I'm over run with emotion tonight. We are "rooming in" with big boy JD (who by the way, hit 5 pounds tonight!) at the hospital - I guess they like to test our parenting ability before we take him out into the big bad world by ourselves. It's so much fun! They have us in a room downstairs from the NICU so we have a shot at this parenthood thing without any help for the night. I wish I put a bit more thought into making it more festive but I was so worried about getting to this point that I didn't think about what we would do in our room once we got him here. Oh well. I find that just staring at him with no tubes or wires is actually plenty fulfilling.



Here he is, watching his first (of many) World Series with Daddy. It's game three of the world series between Detroit and St. Louis. STL is ahead, 2 to nothing. Unfortunately, JD is sleeping soundly through the game, but he must be wondering what that sound of the tv is since he's so used to beeps and chaos. I wonder what is going through is little brain? We're about 30 minutes away from his next bottle so that is probably what he's dreaming about huh?

Tomorrow is a day that we have waited so long for. And until yesterday, I never really let myself think too much about their homecoming date because I've been cautioned for so long to just take it one day at a time. It will be one of the happiest days of my life thus far. And it will be tied with the day that Cole gets to come home, in the next week or two. Having both boys home will be heaven for both C. & I. It's time for us to get our family home and get on with our lives. We've been in limbo for so many months.

I know that leaving Cole here tomorrow will be awfully hard; and I'll cry my eyes out. But I'm sure that my tears will also be tears of joy, that we get to take one of the boys home. It's a bittersweet day - like so many others we've had throughout this journey.

Cole has really picked up the pace today ~ he's doing great with his feedings and his weight is increasing nicely each day. He knows that JD is leaving, I'm convinced. And he's going to do his darndest to follow closely in his foot steps. He's a fighter and he never gives up - I'll never underestimate him, that is for sure! He's our little miracle baby.

We're scheduled to be discharged sometime tomorrow (Wed). Which will be 8 weeks and one day after the day they were born (36 weeks and 2 days old gestational age). That's pretty good for preemies born at just over 2 pounds. We've come a long way baby! Until tomorrow - wish us luck tonight. And a little bit of sleep!

P.S. - The photo below is of C. snuggling in on THE COUCH for the night. After so many nights on the brutal couch while I was on bedrest, let it be known that I offered the bed and he declined it! He's actually more attached to the couch than he will ever admit I think....