The Real Picture

Our lives these days seemed consumed with therapy.  All the fun things you see on the blog are squeezed in between those therapy appointments.  When trying to schedule with friends to get together, I say, "Well, we can't do Monday, Tuesday, Thursday, or Friday this week.  We have therapy on all those days, so I guess it will have to be on Wednesday this week."  As I have mentioned before, I try to remind myself that, at least, I have some control now about how my kids might turn out unlike the helplessness I felt when I was only able to stare at them in their plastic homes (isolettes) in the NICU. 

Sadly, their big sister has to go along to countless appointments too.  Soon, she will be starting school again so her days can be filled with painting, reading, and playing with friends instead of yet another appointment.  We didn't have her enrolled in school last year because of the threat of her contracting illnesses and bringing them home to babies who had just spent 4 1/2 months in the hospital and who had severely compromised immune systems.  It saddens me to think about how much she has had to sacrifice since the twins' arrival.  I know she doesn't understand that all four year olds don't spend several hours a week at their siblings' appointments, but I do wish I had more time to do normal things with her.  Actually, I think she enjoys going most of the time.  She is Camdyn and Cade's little cheerleader at therapy saying, "Come on bubba, I know you can do it" or "Yay Camdyn, good girl!"

I feel obligated to paint a real picture of our daily lives.  While we have very much enjoyed splash pads, library trips, and playdates this summer, we do still spend a lot of time in therapy and doctor's appointments.  I counted back on my calendar and realized, so far this year (Jan-July) we have gone to 145 appointments! 

I often feel like people don't truly "get it" which is likely my fault.  Looking back at early posts, I realized that I have always felt like I needed to be the cheerleader saying, "Everything was great" even when it wasn't.  It's not great to have babies 16 weeks early.  Don't get me wrong - I don't want to be negative either.  I am thrilled with how well they are doing.  It is an absolute miracle, and it is a lot of hard work!

"Don't you think they'll get in time anyway" or "she'll do it when she is ready" or "won't they catch up by the age of 2 anyhow?"  No, I don't think that.  If I have any control over it, I'm going to make sure they have every opportunity in the world, and right now, that means going to lots of therapy appointments.  Other kids were chilling out, taking it easy, growing into chubby little babies in their mother's womb for four months longer while mine were fighting to live, so yes, they have to work a lot harder to do the very same things that just "come in time" for other kids. 

Let me tell you who really "gets it" - Brenna.  She probably "gets it" so well, even though she is only 4 years old, because she is there.  She sees how hard the babies have to work to cruise, stand on their own, reach down for a toy, drink from a sippy cup, produce sounds, learn signs, etc., etc., etc.  At least five times a day, I hear her yelling, "Mommy, come look Cade is standing up all by himself!  REALLY, LOOK!" or "Look Mommy, Camdyn is pushing the chair across the floor all by herself!  Good girl, Camdyn!  LOOK Mommy for REAL!"  And even though, the babies have been doing these things or whatever else she is telling me about for a couple of weeks already, I tell her, "Yeah, look at them.  Isn't that awesome?"  I love her enthusiasm.  I wish others were as enthusiastic.  They are awesome, and so is their big sister.  They train like athletes to learn new skills; they deserve the praise. 

Last week we went to a BBQ place to eat.  I had given Cade some beans to eat.  They were a little spicy, so I decided I would offer him a sip of my drink.  I held up my drink not expecting him to actually drink, but there he was, drinking through a straw!  This may not seem like any extraordinary feat to others, but for a kid with a g-tube who wouldn't even take a bottle less than 6 months ago, this was extraordinary.  I started screaming and laughing, "Look Jim, he's doing it.  He's actually drinking through this straw."  Then his personal cheerleader, aka big sister, started in cheering him on with all the enthusiasm of a 4 year old. 

We've all had to make sacrifices, and the babies have had to work their tiny hinies off!  I'm sure we looked a little crazy at that restaurant, but it definitely won't be the last time we look crazy.  This whole micro-preemie life thing is crazy.     

Dressing a Preemie

I love shopping.  I especially love shopping for kids' clothes.  My kids have more clothes than they probably have places to wear them.  On a recent shopping trip, I saw a preemie sleeper.  It actually looked pretty tiny.  When the babies were born, I thought preemie clothes looked enormous.  The babies didn't even fit into preemie clothes until they were about 2-3 months old.  I began thinking about all the ways in which my shopping views had changed over the past year and thought I should turn it into a blog post.  Fellow preemie moms who read the blog can surely relate.

You might be the parent of a micro-preemie if: 

(shopping edition)

1.  you've ever thought that preemie and newborn clothes look giant

2.  you've ever ordered hats on a micro-preemie website because

                    a.  a hat was the only thing your baby was allowed to wear

                    b.  they don't sell hats in size 2-5 pounds at any store

3.  you've ever waited 2-3 months for your baby to grow into a size 2-5 pound hat

4.  your babies had to earn the privilege to wear clothes by showing they could control their own body temperatures

5.  the NICU had to find their tiniest preemie clothes to dress your baby in (and even those were too big)

6.  preemie clothes swallowed your baby



7.  you've ever rolled up the sleeves of a preemie sleeper

8.  you've ever bought only sleepers with snaps to allow access for leads and probes

9.  you've ever avoided buying anything that goes over the head because that would mean you would have to remove the cannula

10.  you ever had a laundry bag to take your child's clothes home to wash them and return them to the NICU rather than a dresser in their nursery

11.  your child's dresser has ever been a drawer underneath their isolette or a basket inside their NICU crib

12.  you've ever bought "NICU clothes" for yourself (i.e. comfortable clothing to hang around in the hospital all day and shirts that are easy to open for kangaroo care)

13.  you've ever avoided buying clothes for your son with footballs or basketballs on them because you were told he may need a tracheotomy and would have a hard time just playing on a playground

14.  you've ever avoided buying any sleepers with ambulances on them because it seemed you may be tempting fate and you wouldn't want them dressed up for a ride in one

15.  you've ever dressed your baby up in his or her best clothes to go to the doctor because you didn't go anywhere else even though you knew the first thing they would tell you at the doctor is to undress them for their exam

16.  you've ever calculated how hard it would be to get to your child's g-tube in any particular outfit before purchasing it

17.  you've ever avoided buying your son onesies because the g-tube sticks strangely out in them

18.  you only buy your son swimsuits with the swim shirt and trunks so he won't mess with his g-tube

19.  your 15 month old can still wear size 3-6 month clothes

20.  your 15 month old's sun hat is bigger than she is (do I hear an awwwww?)

I am so blessed to get to shop for my 3 beautiful children.  When I look at preemie clothes as I pass through a store now, I am reminded of how far they have come.  To think that doll clothes wouldn't have even fit them then, I am simply amazed.  They are still both on the small side, but they are nearly 20 times bigger than they were!  Just imagine if a 7 pound baby grew at that rate, he would be 140 pounds at a year old!  Puts it into perspective, doesn't it? 

Speaking of all that shopping and all those clothes, we sure do go through a lot of laundry around here.  It's a good thing I have my little laundry helpers!

15 Months (11 months adjusted)

The babies went in for their 15 month check-up this week.  They were 15 months old on July 5, but our appointment wasn't until this week, so I thought I would wait to post after our visit. 

It is so strange that they are 15 months old and haven't even reached their adjusted age first birthday yet.  I'm already planning on having another 2 parties for them - nothing big, just some cupcakes.  We have to celebrate their adjusted age first birthay the week of July 25-30 which was their due date.  I'm happy we were never given an exact due date because I don't have to be reminded on any certain date that they should have been born on that date instead of 4 months earlier.  Then, of course, we have to celebrate their homecoming date of Aug. 14th.  I'm sure this all sounds crazy unless you have been through it.  Those that have know that every day is a celebration anyway, so why not declare it a celebration?  They've earned it.  Plus, that means Brenna and I get to make lots of cupcakes and lick the bowls (her favorite part)!  Then we will rejoice as Cade (who wasn't eating anything by mouth only 6 months ago) shoves the cupcake in his mouth happily.  Oh yes, we will party.

What's up with the babies?

Camdyn -

Camdyn gained a pound!  She weighs 17 pounds!  She's really  packing on the weight now (okay, so that may be a slight - or huge- stretch, but she has been gaining more quickly lately).  She has finally reached size 6-12 months.  Eating is going better with her, but she has gained a newfound independence that can make feeding her difficult.  She wants to do things her own way, when she wants to, and no one can tell her anything differently!  We have one more hard-headed, independent woman on our hands.  I tell you; I don't know where they get it! 

She is pulling to stand, cruising along furniture, and standing on her own for about a minute at a a time.  I think she is very close to taking her first few steps soon.  That is going to be so exciting.  She is imitating more sounds and can say a few words - buh-bye, mama, dada, ball.  She is communicating more with a few signs and gestures.  We're working on vocalizing more words and communicating with signs in speech therapy.  I feel like she understands a lot of what is being said; she just doesn't know how to communicate what she wants yet.  We are still struggling with holding and drinking from a sippy cup.  She will be working on that in occupational therapy.

Cade -

Cade now weighs 20 pounds, 9 ounces.  He is finally gaining again.  He had lost weight when he was sick, but he is slowly putting it back on now.  He has been eating great lately!  He even held a spoon, brought it to his mouth, and ate off of it today.  I was very impressed.

Cade is also pulling to stand and cruising along furniture.  He can stand on his own too but only for about 20 seconds.  Cade has really started to imitate a lot of sounds recently.  I can tell that he wants to make the sound even if he can't get it right yet.  He can say the same words as Camdyn, but he doesn't say them as often.  I know he understands me when I speak or use signs, but he isn't really using any signs yet.  He pays attention when I am telling him words though.  I can see his little brain working and processing the word.  Cade is also still struggling with a sippy cup.  He did surprise us yesterday though by drinking from a straw!  I've tried again, and he wasn't interested, so I guess we'll see where that goes.

I asked the doctor about removing the g-tube, and he thought it was still a little early.  Cade will have to go back to the ENT to be scoped again, and he'll have to do another swallow study.  The scope will tell us how his vocal cords are functioning and how they are protecting his airway.  The swallow study will show us if he is swallowing safely.  They are still a little concerned about his pneumonia in May.  They want to make sure that it was not due to aspiration (food in the lungs) before making any decisions about removing the tube.  I want the tube out, but I also don't want there to be any chance of having to do another surgery if he were to need it back in.  The tube really isn't a problem.  It doesn't bother him at all.  I think it bothers Camdyn more.  She always wants to pull on it in the bathtub. 

Overall, they are doing very well.  It seems that we have spent the majority of our summer in therapy.  We spend 2 hours on Mondays in occupational therapy, 1 hour on Wednesdays in occupational therapy, 2 hours on Thursdays in speech and physical therapy, and 1.5 hours on Fridays in speech therapy camp.  It can become overwhelming, but I love seeing the benefits of all the therapy. 

The babies are at such a fun age where they are discovering everything.  It has also been a lot of fun watching them interact with Brenna and Brenna interact with them.  She talks to them just like the speech therapist does - "do you want the ball - ba-ba-ba-BALL?"  I also hear her cheering them on when they are cruising along the furniture or reaching for a toy - "you can do it Camdyn - good girl!" or "come on bubba - good boy!"  It is so sweet.

 

I have to take a moment here to reflect on how far we have come.  Here's a picture taken last July.  I've included part of the blog post from a year ago. 

My babies are finally together again after 13 1/2 weeks. (7/6) They are now in the same crib together, and they look so cute. They get to cuddle up next to each other. It is slightly easier to leave the NICU now because at least I know they have each other. On the 4th, all the open crib babies had flag blankets on. It was so cute. They looked like a little parade of patriotic babies. Notice that both Camdyn and Cade have no cannulas! They can breathe! All by themselves!

                      
 
and now . . .  Not only can they breathe all by themselves - they can smile, laugh, play, get into everything, give hugs and kisses, and even fight with each other and their big sister! 
 
Looking back at old posts brings the memories back so clearly as if it was just yesterday.  I can feel all the pain and joy so vividly.  Because the pain and worry of those days still feels so real, I don't look back at old posts very often.  I end up in a mess of tears (like I am right now), but wow, have we come a long way.  I am so thankful that the babies are doing so well.  I thank God every day. 

Fun Times!

I know I am behind on posting, but it's because we have been having so much fun lately.  We do still have a ton of appointments, but somehow, it is becoming our normal.  This week alone we have 12 appointments between the two babies!  In between all those appointments, we have been managing to fit in a lot of fun time with playdates, library trips, splash pad play, etc.  I feel like our fun time is somewhat limited because as soon as RSV and flu season rolls around, we will be back on lockdown, not taking the babies anywhere.  Yuck!  In the meantime, we are going to try to fit in as much fun as possible!

For the 4th of July, we had some friends come over to our house.  The dads fried fish while the moms watched the kids in the baby pool and on the slip-n-slide.  Even though there were no fireworks due to the drought, we all had a great time.

my patriotic babies

Brenna was tickling Camdyn here.

Mommy and the girls

Slip-n-slide fun!

Bathing Beauties!

the little girls in the baby pool

the kid crew

Brenna started Tae Kwon Do last week.  Isn't she precious in her little uniform?

This past weekend we went to Great Wolf Lodge in Grapevine with some friends and their kids.  The grandparents took care of the babies, so this trip was just Brenna and Mommy and Daddy.   We had so much fun there. 

Brenna and Scout watching the animated story time in the lodge lobby.

the kids' table at Macaroni Grill - I'm sure the waiters loved this.

the girls at the restaurant - Look how cute they are sitting stair stepped up in age.

Daddy, Mommy, & Brenna at the pool.  They had both an indoor and outdoor water park area.

the indoor water park

all the girls in the pool

Brenna and Scout got to meet Virginia the Wolf after story time.

We had a lot of fun playing MagiQuest.  Jim and I enjoyed it more than Brenna.  In fact, on the last day, Brenna went swimming with Aunt BB, and Jim and I finished the quest on our own.  It's like an electronic treasure hunt where you are given clues and have to find things throughout the different levels of the hotel, kind of Harry Potter like in theme.

 They had several water slides.  Brenna was scared at first, but she really started liking them after a few rides.

 As you can see, we have been doing our best to fit in some fun time.  I can't wait until the babies are older and bigger so we can take them here too.