Welcome to Holland

I have heard parents of special needs kids talk about being in Holland.  And, while my guys aren't special needs in the classical sense . . . well, maybe they are??  Sean is delayed, but the expectation is that he will catch up - or he might not.  But, then again, both have a possibility of having CP.  Oh, wow. (I need a moment.  Okay, back on point.)  I didn't know what these parents were referring to when they spoke of Holland.  So, I googled it.  And, now, I know.  I, too, have been diverted to Holland . . .

WELCOME TO HOLLAND

Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this . . .

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy . . . and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away . . . because the loss of that dream is a very very significant loss.

But . . . if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.

Busy, Busy Day

Today we trotted off the Kaiser for physical therapy asessments and pediatic check ups.  Oh, it was a busy afternoon.  First each boy got a visit with PT.  Let's see . . . anything new?  OH YES!  Sean has the sweetest little voice you have ever heard and a great little smile.  He kicks his legs to let you know he is excited.  But, he still refuses to participate in tummy time.  He is perfectly content sleeping on the floor.  Too bad we have figured out that sleeping is Sean's way of checking out.  Not okay, little Seanie.  You need to participate! :)  So, the PT and I talked about some ways to help Sean during tummy time.  Let's see how that goes.  How about Colton?  Well, that little guy is rolling over (yeah, it's an old trick for him!), chattering away, smiling, laughing and his new favorite, flirting!  The PT did notice that Colton's hamstrings and shoulders are a little tight so we will be starting stretching exercises.  Colton has already shown that he doesn't care for the hamstring stretches but he likes to stretch his arms (kind of like he is lifting his arms on a roller coaster - prepping the kid for Disneyland already!).   At the end of the appointment, Colton threw up all over himself and his carseat.

After the PT, we headed over to the pedi clinic.   The doctor was very happy with how the boys are doing.  We weighed and measured the boys . . .

Colton: 12 lb, 0.7 oz; 24.75 inches
Sean: 11 lb, 5.2 oz; 23.25 inches

The boys also got some vaccinations today.  They weren't happy about that.  Sean threw up all over himself and me.  Two barfers, one day.  Oh wait, I have to add in the barfing in the evening.  Yup, poor Colton isn't having a good night and barfed on me. 

Last week, while in Roseville, the boys, Bubba and I stopped by the NICU to see some of their nurses.  We missed Auntie Donna, but we got to see Auntie Carrie and girlfriend Jess.  Someone asked why Jess got to be the girlfriend.  Um, hello, SHE'S JESS!  And, Colton began flirting with her a long time ago!  It was nice to see them.  But, I have to admit, it was weird walking the halls of the NICU.  Very weird.  I am still not sure how I feel about it. 

On our way out of the NICU, we ran into Dr. A.  He was the first neonatologist we met when we arrived at Roseville and he was the doctor who attended the boys delivery.  I thanked him for taking care of my boys and told him we know that little Seanie was defintely a miracle baby as he really made it against all odds.  I think my words were, ". . . yes, we know Sean shouldn't have made it . . ."  Dr. A shook his head in agreement and I think I saw a tear in his eye. I turned my attention to Dr. A's daughter and told her that she should be proud of her dad because he helped save my boys.  It was so sweet, she barely said a word to me; she hugged her dad.  As we left the NICU, I cried. 

This weekend is going to be busy as well.  The boys are hosting a BBQ for close friends and family.  My only question is: which boy is going to man the grill??  LOL!

A Link

This is a link to my friend's blog.  He boy, Jacob, has been missing for quite some time. 

Jacob

Happy Half Birthday Boys!

Well, my little guys are 6 months old now.  It's amazing how big they are and how far they've come.  Sometimes it seems like they were born yesterday.  Othertimes, it seems like the NICU experience was so far in the past. My life has changed so much in the last 6 months.  I have made new friends and I have fallen in love.  Oh, the sweet little voices these two guys have.  I could listen to them all day long.  Their sweet little smiles.  The twinkle in their eyes.  Oh, those deeply serious brown eyes allow Sean to pull you in.  You instantly fall in love with him.  And, then, there is the Colton and his blue eyes he got from Daddy.  Oh, how those blue eyes dance!

Tomorrow (or today, I guess) the boys are making their social debut.  My very dear friend is celebrating her oldest son turning 18 and graduating from high school  It's funny, our lives are so different - she has one kid graduating and one getting ready for her drivers' license.  I have two babies who are just now discovering their hands.  She has decided she wants to work day shift - yes, getting to work at 7am!  I am a diehard pm shift worker - nothing like showing up to work at 3pm!  But, I wouldn't trade her for anything in the world!  LOVE YOU, JEN!

Speaking of Jen, let's talk about another Jen.  She gets a pedicure just about every other week.  I used to think she was crazy to do this.  Now I am thinking that I should be doing this.  I need to take the time to pamper myself.  I used to think that getting my brows done was pampering enough.  Now I have decided that getting my brows done do not count as pampering in any way, shape or form!  So, I think I am going to start getting pedicures.  I still think Jen is crazy, but it's for completely valid reasons that have nothing to do with her pedicures!

NIGHT ALL! :)

ED and PT Visit Follow-ups

Colton went to see the neurosurgeon yesterday.  The doctor was very happy to see how he was doing.  He has no explanation as to why his soft spot is so full, but said sometimes it just happens (even in non-shunted kids).  So for now, we will watch it.  And, even with this little bump in the road, Colton's neurosurgery check up will be in another three months.  Before that visit, he will have a "fast MRI."  As the doctor explained it, a "fast MRI" is a quick MRI used to get some basic shots of the ventricles, it doesn't require him to lie perfectly still or be sedated and there is no exposure to radiation. 

A fellow NICU mom, whose baby is still in the NICU, asked about why Sean qualified for Early Intervention (EI).  Both boys were evaluated because of their prematurity.  Colton is actually right where he should be for his adjusted age.  Because if this, Colton qualifies for their prevention program.  This means they will do monthly check ups to make sure he remains on track.  But, poor little Seanie is behind where he should be based on his adjusted age.  What does that mean?  He isn't doing what other 2 month old babies do.  This means that Sean meets the requirement for EI services.  Seanie will get weekly visits from the developmental specialist who will work with him, making sure he continues to progress.  He won't necessarily catch up in a few weeks or months.  He may continue to be behind for a few years.  So, for him, it won't be important that he is meeting milestones based on his adjusted age.  It will be important that he is progressing towards meeting each milestone and that he does eventaully meet them.  Now, as I have said before, Sean is a little guy who likes to do things on this own terms. 

Sean did get his PT evaluation today at Kaiser.  The PT didn't tell me anything I didn't already know about little Seanie.  She said, yes, physically, he's behind.  She gave us some suggestions on how to work with him: more tummy time (LOL! He hates tummy time and protests by falling asleep!) and play with him while he is on his side (encourages him to bring his hands in front of his face).  So, poor little Seanie may protest but he has to do his PT activities. 

I also mentioned to the PT that the neurosurgeon had encouraged us to get Colton to sleep looking towards the ceiling to help get rid of his preemie head.  She looked at his head and pointed out that it's not just that, but he puts pressure on the side of his head opposite of this shunt and that his little head is lopsided!  OMG!  Now we need to make sure he sleeps with his head straight and play with him to encourage him to put some pressure on the shunt.  And, so far, it's going great!  He is lying in bed with wedges next to his head to keep him looking forward.  LOL!  He hates it!  He is in there with a look on his face that says, "You can make me lie like this, but I am NOT going to sleep!"  Great!  The kid is as stubborn as me!

After the PT visit, we stopped by and the boys got to meet one of my favorite midwives (or midwitch - as she calls herself).  I did find out that she is going to be a Nana this fall and one of the other midwives, who we also visited with, is going to be a Mama in the fall.  I warned her to double check to make sure there weren't two babies in there.  LOL.  We had a nice long visit and I thought, at the end, she was going to try to take one, if not both, of the boys with her.   Good thing I brought Bubba with me as my muscle.  :)

Off to enjoy one of those delicious lactation cookies and snuggle with the poor baby that is being tortured by his positioning wedges.  Bad mommy . . . I've already given in . . .

Lactation Cookies

Since I was talking about my lack of milk production, I thought I would tell you about the lactation cookies I eat to help with my milk production.  Oatmeal, flax seed and brewers yeast all help with milk produciton and these cookies contain all three.  I copied this recipe from recipezaar.com.  I make them with the 4 tablespoons of brewers yeast.  Bubba, who hates oatmeal cookies, will eat these.  Oh, and since I LOVE chocolate, I make sure my one cup of chocolate chips is very generous! :)

Oatmeal Chocolate Chip Lactation Cookies

by Noel Trujillo Recipe #192346


This recipe is great for mothers who are breastfeeding. It helps to keep your milk supply up or increase your milk supply. Use more brewers yeast and oatmeal if you are wanting to increase your milk supply. You can use more chocolate chips if you like or any kind of chips.

by BridgetMarie

27 min
15 min prep



SERVES 54 , 4 1/2 dozen

1 cup butter

1 cup sugar

1 cup firmly packed brown sugar

4 tablespoons water

2 tablespoons flax seed meal

2 eggs

1 teaspoon vanilla

2 cups flour

1 teaspoon baking soda

1 teaspoon salt

3 cups oats

1 cup chocolate chips

2-4 tablespoons brewer's yeast

1.Preheat oven to 350°.

2.Mix the flaxseed meal and water and let sit for 3-5 minutes.

3.Beat butter, sugar, and brown sugar well.

4.Add eggs and mix well.

5.Add flaxseed mix and vanilla, beat well.

6.Sift together flour, brewers yeast, baking soda, and salt.

7.Add dry ingredients to butter mix.

8.Stir in oats and chips.

9.Scoop onto baking sheet.

10.Bake for 12 minutes.

11.Let set for a couple minutes then remove from tray.

© 2009 Recipezaar. All Rights Reserved. http://www.recipezaar.com

Long Overdue Update

I have been so behind on updating the blog.  I really need to become more organized in life, in general.  Having two little guys in the house keep me busy, but I am lucky that I only work three days a week. 

We have had our first ED visit.  When we woke up Saturday morning, Colton's fontanel (soft spot) was swollen.  For him, it's normally sunken in (not normal for babies, but normal for him since he had his shunt placed).  His behavior was 100% normal - no crying, no fussing, not lethargic, no doll set eyes, no vomiting (all symptoms that the shunt isn't functioning).  So, off to the ED we went.  He got another head ultrasound which showed his ventricles look beautiful!  :)  But, we left the ED with no answers.  Colton will see the neurosurgeon tomorrow. 

Colton is now smiling and cooing.  He loves to flirt with the ladies while in public.  He kicks his legs when he gets really excited.  He also rolls over on his own.  He sleeps well at night - at least 6 hours.  He loves to get into bed with Bubba and me and breastfeed.  He is a champion breastfeeder.  Since I don't produce a lot of milk, he gets formula in the daytime.  Whatever I pump during the day, Sean gets.  Sean acts like breastfeeding is torture.  He looks at me like, "Why are you making me do this?"

Sean has qualified for Early Intervention.  Babies qualify when they are not keeping up with their milestones.  It was expected since he spent so much time on the vent and in the NICU.  What this means is that Sean gets a weekly playdate with a developmental specialiast from Easter Seals.  He sees the physical therapist at Kaiser this week.  I am interested to see what she says about him.  If she thinks he needs more physical therapy than just monthly, we will have to arrange that as well.  Sean has just now started smiling. 

After all that we have been through, we are very fortunate that the boys are extremely well behaved.  They have a great schedule that they actually set.  They don't cry unless hungry or they need their dirty pants changed.  I think we've earned some good behavior, don't you?

Night all! :)