Tuesday, February 21, 2012

Quite the week!

Sunday brought their first birthday week to a close with a family party. Let me just say these little one's are loved. I think they got enough clothes to keep them clothed all summer... Oh and the swimsuits they got... Sooo cute. Can't wait for warmer weather now...

Other then that, not too much more going on, Blake's still refusing to crawling and thinks rolling everywhere (including under the couch) is better. His latest trick is rolling almost into the kitchen and attempted "Pull to Stand" on the steps. Silly little man.

I think Addison may actually be gaining some language skills and Blake is maybe possibly saying "Mama" more frequently although he still thinks its funny to tease me with it. Stinker! He's also got a "scary voice" he learned from Daddy and growls and grumbles. My heart still bursts with joy over these two.

Addison had some kind of reaction to her smash cake, and apparently Benedryl makes her hyper. Made for an interesting 24 hours lol.

Thank you to all who helped us celebrate our two miracles and for all the love you've sent along the way!

Here's some pictures from our weekend... (Please note, my husband HATES pictures and getting him to not hide from the camera is near impossible.)

Friday, February 17, 2012

Today has been one of those days...

It's "babies gang up on Mommy day" here. One cries, the other cries...for no apparent reason.

This was my morning...

7 am - Wake
           Change diapers
           Put babies in high chairs
           Make Blake's breakfast - Oatmeal with fruit, Yogurt & 4ozs Milk
           (Keep in mind I cannot feed Addison simultaneously and Blake doesn't have patience to wait for    her to eat, so he goes first.)
           Addison's too close the the patio door and is playing with the blind. "Addison stop please....(she continues)...Addison NO...." More playing with the blind as she looks at me and giggles and raises her brows daring me not to laugh at her.
           Stop feeding Blake, move Addison's high chair.
           "Blake look at Mommy, open up." - Put spoon near mouth, he turns his head to see what his sister is doing. (We are only two bites in).
           Finally Blake is fed 20 minutes later, wipe him up, clean his tray, he sits and waits.
           Prep Addison's breakfast - Formula, and 1 tablespoon of fruit.
           Begin Oral Stim, this will be fun, she's already not in the mood. Pulling at the brush, chew tube, etc.
           "Addison, calm down. Let's eat." Cue giggle, turns her head and gags even with nothing in her mouth.
           This continues for 30 minutes, I repeat "Addison, no no. Addison calm down...Addison careful. Good swallow. No don't spit it out. Addison no." But we press on until our time limit is up. I counted, she ate 2 spoonfuls, the rest she spit out, or just plain didn't eat. She's crying, I want to.
           And now she is screaming about something, which prompts Blake to scream. Tears are pouring down Addison's face.
           Tube feed her and give her a dose of Motrin.
           "It's ok" I tell myself. There's always lunch time.
            Finally they play in their exersaucers and watch Mickey's Clubhouse. It's quiet for a moment.

It's only 8 o'clock. Is it nap time yet?

They nap, and as I peek in to check on them, I see this ...

And I remember that no matter what, they are perfect in my eyes and it's all worth it. I wouldn't trade them for the world. They took a 2 hour nap, which is mostly unheard of these days and will probably ruin the afternoon nap, but we'll see. They woke up and were right back at it. Blake's decided he's not drinking his milk, he's done and Addison tried to crawl away as I tube fed her. But it's ok.

Tuesday, February 14, 2012


A year ago today our world was turned upside down when Addison and Blake arrived 14 weeks early weighing less then 2 pounds each, and now here they are... a whole year old! I'll admit it's better sweet, but we couldn't be more proud or excited.

It's the little things that make life worth living,
It's the little things that help us make it through.
I never knew how true those words were,
Until I first set my eyes on you.
I feared because it was too early;
I cried because it was too... soon.
Yet I underestimated
The strength in one as small as you.
You were born a fighter, a warrior;
You would not quit nor move on.
You strove, you fought, you tried,
Until your battle was won.
When hope might have faded,
When the trial seemed too great,
A tiny child, despite the odds,
Fought what was thought fate.
And a little baby triumphed,
A baby thought too small to live,
A baby knew that life
Is the most precious thing to give...

Mommy & Daddy love you both very much Addions & Blake. We are very proud of you both.

A year in pictures...


Addison & Blake

Love Always,

A year ago TODAY.....

Jake woke up for work, I begged him not to leave. Something was off. I got in the shower thinking the warmth would help my aches. I lasted literally ten second. I drank water, layed on my left side. I cried, "I think it's time."

Jake grabbed the bags, he helped me dress. In the car I thought I'd puke everywhere, my nerves were getting the best of me. He drove as quickly as he could, we detoured morning traffic. At 7:30, I was checking in at L&D. The nurses were looking at me like I was crazy as they hooked me to the monitors. They found the babies heartbeats and nothing else. My OB was paged, and an "veteran" Midwife came in, she believed me when I said "These are contractions." She moved the monitor and sure enough, 3-4 minutes apart. My OB called her while she was in our room and said he'd be there at 10 am.

What should have been "hours" seemed like minutes. My OB walked in with a look on his face that said it all. I laughed a little and said "I don't get a choice do I?", his answer, "Nope. I'm going to check to see if you've dilated, the Perinatologist is on his way back to check on the babies. You're not dilated," He said to me. "Book the OR, and call the NICU" to the nurse. "Your babies will be here at lunch time."

My last question, "We shouldn't expect to hear them cry right?"

"No most likely they won't, their too small. I promise I'll take great care of you and them both, we'll all do the best we can," and with that he was gone. (I later found out he spent the next two hours with the NICU staff discussing our case and making them promise they could handle these babies.)

Jake called his parents. I called my mom, she got there first because she only worked two blocks away. One of my Uncles brought my grandmother to me. My sister in law sent us a text message saying she was praying, it would all be ok. I sent messages to my three of our closest friends to let them know. One demanded answers, answered I didn't have. I turned my phone off.

I was moved to another room, and my "labor nurse" came in and got me prepped. They called hospital clergy to pray with us. I sobbed from then until, in the OR when I knew it needed to be still for my spinal to be placed. Jake was finally allowed in the OR.

I hated my c-section experience, absolutely hated it.

At 1:10pm, Addison made her grand entrance, the NICU team took over with her and were working on her from the corner of the OR. I remember two faces vividly, neither of which are my children. The Nurse Practitioner came by with Addison in the isolate and said "Say Hi, to Mommy" and showed me her face and she was gone, it as a blur, I don't remember what she looked like. The Neo who we met during one of our many trips to L&D gave me a brief report on Addison and then she rushed out to be with her.

Blake arrived at 1:11pm and moved to the next OR room where a NICU team worked on him.

While my OB worked to get me closed up, the second NICU team came in and told Jake to hurry over to the next OR and say hi to Blake before they took him up to the NICU. In seconds he was back, "He's gorgeous," he told me. I didn't even get to see my little boy.

We never heard our babies cry in the delivery room. I didn't get to hold them to my chest, Jake didn't get to cut the cord. In a flash it was all over and I was back in L & D recovering. I could hear mom's nearby screaming as they pushed, babies crying as they took their first breaths. It was so very cruel. I was being handed a piece of paper with weights written on it, that was it. No babies to hold. A piece of paper that read "A - 1lb 10oz/740 grms, B - 1lb 14oz/820 grms".

Later once they were ready to move me to the Mother/Baby unit for the duration of my stay, they arranged to have us stop in the NICU and meet our babies. I saw Blake but immediately our attention was called to Addison. Clergy was at her bedside and addressed us, I will never forget his words. "It's my understanding that you wish to have a Baptism take place, we only do these in emergent situations. I've been informed by the staff that now would be the time to do this for your daughter." They didn't expect our baby girl to make it. (Much later I found out that before we arrived she had coded and was down for few minutes before they could get her back.)

Words I couldn't speak, instead a head nod. Addison was Baptised as two L&D nurses, my husband, the Clergy and Addison's nurse held hands and prayed. I was moved to my room right after that, no time to linger and visit. It would be many many hours before I could see them again and before I could go back up to visit the Neo came to see us (a Neo who I'd never met before) and give us the grim outlook on Addison. I'll forever remember the fear in his eyes as he broke the news and asked just how far we wanted him to go. He listened to us and took our advice. Nurses prayed over her as they worked to keep her alive.

A year ago today, two of the most amazing, precious, and strong miracles were brought into this world making us parents for the very first time.

Thursday, February 9, 2012

Feeding Tube Awareness Week... Day 5

Today has been a pretty good day in this house. Blake is feeling much much better, and Addison is her usual happy go lucky self. I think they sensed excitement in the air though, because tomorrow we are meeting up with one of our Mommy friends and her beautiful baby girl for our first trip to the Aquarium. Let's just say after being down for almost a whole week with a sick baby and being trapped in the house, we (ok maybe me more then them) are soooooo excited to be getting out for alittle while.

I think that our trip to the Aquarium give me the perfect opportunity to highlight what exactly goes into a "day trip" with a tubie baby (and twins). First off most of you reading this will probably think I am going overboard, but anyone with a special needs child knows there is no such thing. It is better to be safe then sorry. And also keep in mind that I have to be prepared for a "tubie removal" and have all things necessary to pop a new one in should it some how "magically" fall out (aka Addison yanks it or some other mishap).

So now for your viewing pleasure, this is what we will be taking with us tomorrow......

What you see here are the following: Change of clothes for each baby (because "crap" happens), Tylenol & Motrin, spare can of formula (just in case), 4 prefilled bottles of water, pre measured formula, pacifiers, wipes (Target, Up&Up brand), flush syringe & feeding syringes, Puffs, extra water for flush and just incase, diapers (we use Luvs), spare Mini-One button kit, baby food for Blake, and spoons. What you don't see here is the massive bottle of hand sanitizer and the tube extension.... yes I fit all of that into one diaper bag (thank you to one of my favorite cousins for the most awesome diaper bag ever). The prefilled diaper bag at the top has everything I could possibly (and then some) need should we have a "button" emergency. My theory is that if I have it I won't need it, and better then needing it and NOT having it.

See I told you I got all that stuff to fit in to black diaper bag. The second diaper bag always stays packed and stocked. Also note the pink thing hanging from the black bag..."dirty diaper bags". Yup I am always that prepared.
So there you have it. That's what it takes to get these two out the door for a day away from home. Is this my everyday arsenal?...nope. I do not take all of this stuff for runs to the grocery store or a trip the mall, I have just my basics then. But these are all items we need on hand when we are out and about for long periods. Thank goodness for the basket on the double stroller, and calling ahead and getting permission to bring the stroller (they usually don't allow strollers...makes no sense but they made the exception for the princess).

Wednesday, February 8, 2012

Feeding Tube Awareness Week... Day 4

First an update on Blake. He's doing much better today, except we learned that the Nebulizer gives him a rash. It appears and disappears just as quickly as it comes up. This could only happen to us right? But anyway, he's feeling and sounding better so we push on.

Secondly today we're focusing on the following:

How has your attitude/family/friends' attitudes changed towards tube feeding? What has awareness of the positive benefits done to change perceptions?

I think that in the very beginning some of our family was apprehensive about the decision to go forward with a G-tube for Addison, most people associate feeding tubes with very sick, critically ill or near death patients and I think that played in the back of everyone's mind. Honestly I'll admit it, Jake and I weren't very fond of the idea either. It took a lot of talking to specialists and research before we were completely at terms with what needed to happen and could move forward. I think despite their apprehensions our families were supportive.

I already knew 1 friend who has a tubie baby (and she highly advocated for the feeding tube, and offered support in ways other's couldn't) and as we posted about Addison's journey we learned that a supervisor who I worked for also had a tubie baby, who successfully weened from the tube and is now (get this) having a healthy baby of her own! Their stories, showed us hope.

Seeing Addison grow and blossom like every other baby had done amazing things to show people just how helpful a feeding tube is in the growth and development with some babies. I think it renewed hope in a lot of people. Addison's experience has shown what amazing tools a feeding tube can be, and disproven a lot of stereotypes.

We are super proud of our Tubie and I will continue to share her story with others...To give them hope and courage and support.

I am challenging our friends and family to answer this question below in the comments section as well. I'd love to know how our story has changed your perspective.

Tuesday, February 7, 2012

Feeding Tube Awareness Week ..... Day 3

First I apologize for missing a day, however I have good reason. I've got a little boy who is not feeling so hot right now. Seems that maybe Mr. Blake just can't let his big sis steal all the spotlight. He's apparently got a bad respiratory cold or something going on. The Ped sent us home with steroids and a Nebulizer. We're not a full day in to the meds and he's finally starting to sound just alittle less wheezy, I am hoping he's better soon and it doesn't get worse. (Please send us some prayers that he is feeling better ASAP). I will admit he isn't letting it hold him down in the least either, he's acting like nothing is wrong besides his occasional whiny fit that doesn't last long. If it wasn't for the horrible noisy cough and breathing you'd never know...

Here's a picture of our little trooper hanging out while he gets his Nebulizer treatments...

I think it's starting to annoy him a little, but if it's just me and him around he tolerates it like a champ.


Now back to FTA...

Let me give you the inside scoop to what it's like "A Day in the life of a Tubie Mommy".

A typical (aka... no sick babies, no "distractions") kind of day begins at 7:00am for Ms. Addison. Usually, most days she is already awake, however she does like her sleep and there are days when I have to wake sleeping beauty (I know...who wakes a sleeping baby? But I pretty much have to in order to get all of her calories in her system within the day. She's a belly sleeper and I need to get to her belly to tube feed her.) After diaper changes for her and Mr. Blake, they both have a seat in their high chairs while I get their breakfast ready.

Once I've got their "food" ready, I usually feed Blake first because if not he'd have a meltdown by the time I fed Addison, and I also think it's good for her to see her brother eating via spoon or self feeding. Blake gets his usual, oatmeal and fruit. Then it's Addison's turn. She gets a tablespoon of the same thing her brother had for breakfast. But before I can even stick the spoon in her mouth a few things have to happen. She gets her gums and tongue massaged with a Nuk Brush, and then she gets a few bites on her Chewy Tube. This happens a few times and once she has gotten together and in a good swallow pattern, we start with our first bite.

She get's 30 minutes to eat. After that she looses focus and you can forget getting her to regroup herself. Some days she does excellent and will take the full tablespoon. Other days she smacks, and fights for even a few bites. We offer her sips of formula throughout via a spoutless sippy cup where we actually "pour" the formula in her mouth once she closes her lips around it. Everything has to be "just right" for Addison to really stay focused and succeed. We attempt this 3 times a day, as many days as we possibly can. If she gets sick we will attempt it, but if she isn't feeling up to it we back off.

Feeding has been a lot of trial an error with her. She still has aversions to objects in her mouth unless she is in control. Recently we've started a little more "self feeding" with her, with foods that are easy to hold yet soft enough to disolve in her mouth. She does do much better with self feeding, but it's still pretty early on for her so we want to be extra extra careful.

Going out means I must have a bag backed with her formula, her Chewy Tube, Nuk brush, a syringe for bolus feeds and her feeding tube extension, bottled water and extra formula. I'd say that 98% of the time if we are out and about I don't attempt spoon feeding her (she get's way to distracted) but I will give her things that are safe for her to feed herself or chew on.I also carry a spare button in the car and in the diaper bag just incase her's comes out and needs to changed ASAP. (Otherwise I change it every 3 months per doctor's orders.)

We aim to have all our meals at the table together and treat her just as we would Blake, as much as we can. She gets 4 "meals" a day via bolus feeds just like Blake. (I bolus feed her after we attempt table food). As her volume of table food increases the bolus feedings will decrease in volume, but we aren't there yet.

Aside from that, Addison does everything Blake does (and then some). She is constantly up to something.

Sunday, February 5, 2012

Feeding Tube Awareness Week... Day 1

As many of you know our precious baby girl has a feeding tube. Without her feeding tube, she would not be celebrating her 1st Birthday with her twin brother this Valentine's Day.

I'll start off by explaining why Addison specifically has her feeding tube.

In the NICU she was diagnosed with SEVERE acid reflux, they feared that if they tried to bottle feed she would aspirate and fluid would fill her already vulnerable lungs. Pair that with an uncoordinated SSB reflex (Suck, Swallow, Breath) in part because of her cleft palate and we now have a baby who did not learn how to bottle feed and was then diagnosed with FTF (Failure to Thrive).

When she was just shy of 4 months old doctors at University of Maryland performed a Nissin Fundo (a procedure that makes a loop around the lower part of the esophagus/top of the stomach, large enough for food to pass thru but hopefully not reflux back up) along with this they also at that time placed her G-Tube. Since coming home from the NICU, we have begun working on oral feeding, it's been a very slow to go process. We tried bottle feeding, it didn't work, so we moved on. As of right now, she takes less then an ounce of liquid by mouth at any given time and when she is in the right mood she may surprise us and eat a tablespoon of baby food. Clearly not enough for an almost 1 year old to survive off of.

Her doctor's and therapists remain hopeful that she will improve even more once her Cleft Palate is repaired. And they anticipate that we will be able to remove her feeding tube by the time she is 2 years old. Like I said, it's been a slow process this far, but dang it the girl loves food and she just keeps at it. We have good days and we have bad days, just like everything else.

Awareness is important to our family because of Addison. We have to feed her in public sometimes, and the stares we get will never cease to amaze me. The worst are stares from grown adults, they look at us like we are harming her, or with questions in their eyes. That pity look, like "what's wrong with her". There is nothing wrong with our baby girl, she just does things her way. People look at us like we are nuts when we are feeding Blake "real food" and Addison doesn't have any. We're judged because they don't understand that she could choke on what we are feeding her brother (or any food for that matter), or that she can't handle food.

If more people understood the reason's behind the feeding tube, and what goes into keeping our Tubie safe, then maybe we would get those stares. Or maybe it would open the door for conversation and education. I'll bet there are plenty of people that have feeding tubes, and you don't even realize it until it's time to eat.

And lets not forget, BOTH babies had feeding tubes in the NICU, those were NG's or OG's (nasal gastric, and oral gastric) that were places to relieve air in their tiny tummy's and later feed them until they were old enough to try bottle feeding. For some, feeding tubes are a permanent way of life, for others it's temporary. But the bottom line is, that they eat just like everyone else, except different.

I will gladly take the time this week specifically to answer any questions that you may have about feeding tubes and/or Addison's specific situation...feel free to leave your question in the comment's section below.