Brutal. Some days are just...brutal.

And today is absolutely one of those days!

It snowed last night which earned us a two hour delay. I was excited for the extra time with the twinadoes and even more please when our whole morning routine went smoothly. No tears, no arguments, we all walked out the door smiling.

We were about ten minutes early to school and waiting at the car rider door when things changed. Miss A jammed a 'ring' (in reality, it was the sight off of a pair of toy binoculars) on to her index finger and got it stuck.

Really stuck.

I tried sanitizer. I tried lotion. Being in the car, my resources were limited. Between her dramatic screams I noticed her finger was swelling and she said it was really sore. So - with school still not open, we buckled back up and headed to the ER.

An hour from the actual time of the incident the ER docs (all two of them!) finally freed her. Her finger was still in tact, albeit a little read and sore but we survived.

I don't talk a whole lot the inner workings at home any more, but reality is - some days parenting is hard. Some days parenting Addison is really hard. She's a very unique individual. With a complex and sometimes confusing set of challenges.

When she struggles, I (we) struggle.

Kindergarten has been a huge challenge for her. She doesn't learn like her peers, but she works her but off and we've got an amazing team - doing absolutely EVERYTHING they can do for her to help her succeed. And she is succeeding, at her own pace. Doesn't mean she's not struggling.

She's misunderstood. People look at her and look at me and think I'm nuts when they hear about her challenges. These people don't see the fights in the morning over socks that feel funny. Pants that tickle. Tags that are attacking her back. And don't even get me started on need to brush her hair. Nearly every morning there are tears. I can't fix things and make them not bother her. (Lord have we tried.)

I've never met a child more resilient, brave and strong though - because no matter how uncomfortable she is, she pushes through.

Still there are things she does not understand. I cannot even imagine how in a split second she got this silly toy stuck to her finger, how she ever got it over her knuckle to begin with or how she didn't think, "This isn't going on, maybe I should not push it."

Pieces don't always connect for her. What seems logical to you, me, heck even Mr. B - they're not so logical to her.

One thing I've heard over and over this year, with school is that she doesn't fit any certain criteria. She may struggle with one thing, but do great with another part of the same things, like letters. Her teacher gave me this example, when identifing letters - Addi could id the letter 'v', later during a writing assignment - she asked how to spell 'cave' and the teacher prompted her 'c...a...v...e....", she wrote the letter 'v' without having it pointed out to her. It's hard even for them to find the pieces.

I don't know how to accurately explain today, because it wasn't just the toy stuck to her finger after that. It all went down hill. She's been extra emotional today. Into everything. As in, cannot be left alone for a split second without doing something she knows is off limits.

- Much like the night she emptied all the groceries from the fridge and laid them on the floor. Because 'you're not supposed to put the grocery bags in the fridge and I wanted to help.' Except she missed the part about putting all the stuff back in the fridge, sans bags.

- Or the times she sleep walks and tours the whole house. Thankfully, most of the time, if I don't hear her, Remi does and lets us know.

Most nights, Addi (and Blake) find their way into our bed. I sleep horribly but, I know they're safe. Addison is usually wrapped so tightly to me that I know when she moves. So yeah, it sucks sometimes, but I'm ok with it.

We're all learning and adapting.

Yes some of it is typical 5/6 year old behavior. And it's ok. It really is. But some days are really really hard.

Today was one of those days.

When you have a child with any kind of special needs, it's hard for other people to relate. Hard for them to understand. And sometimes that comes across in odd ways. So, know I'm not being mean or rude when I say we can't do certain things or my kids can't have certain things. I'm not crazy, I'm not overprotective. I'm just the one who spends the bulk of time with them and I know their needs. I can usually predict their reactions to things. (Usually ;) ). My only goal in life is to keep them alive and healthy and happy. Nothing else matters. Really.

<3

Santa Comes to Town...

First and most important.......

ADDISON HAS BEEN TUBE FEEDING FREE FOR 30 DAYS!

30 days ago I tube fed my budding toddler through her feeding tube for the very last time. Today I did a weight check and she is weighing 22.2 lbs, which is steady from a week ago. Which is also a huge accomplishment because as I mentioned, weight loss is typical with tube weaning and they won't take her tube out until she gains weight for 3 months in a row. So holding steady is actually on the right track. I am hoping that this means the weight loss is over and that we will be in the gain column soon.

To celebrate I thought "We should have cake, minus the icing because apparently my kids are allergic to cake icing." (Poor kids.) One of my preemie mom buddies suggested I let Addison and Blake help me bake a cake. And I really am thankful she suggested it because I would have thought about it later and wished that I had. But at any rate. Let me preface this with, I don't bake often, aka I do not have much on hand to bake from scratch or at a moments notice. That's ok with me though, because I am sure a box cake would be better then anything I could make, I tried that once so believe me...box cake is better. This meant a trip to the store. No biggie. I figured I could go after their nap, pick up the mix and such, come home and let them help me bake and hoped that by the time I was done Jake would be home from work to join in on the celebration.

I had talked with Jake during nap time and he indicated that he thought he wouldn't be to late, so I thought I'd check in after nap time and decide either to wait for him to get home and then run out to the store or just go before he got home and get started. After nap time he said he wouldn't be much longer, that he had just gotten to his last job. So I waited. And waited. TWO HOURS LATER, he tells me it's gonna be a while longer. (Plus an hour (+) commute home).

At this point I had found a recipe for some "butter cookies" and had everything it needed (butter, flour, baking powder, eggs, honey) so I had started that BUT the dough had to sit for a few hours in the fridge. I figured, we'll have cookies instead and play it by ear, if he gets home "soon" I'll run out. Otherwise it was time to start dinner and well...yeah. No going out at this point.

Jake finally got home. He wanted to take the dogs out for a walk first, and change his clothes and blah blah, normal "just got home from work" stuff. FINE.. I'll keep waiting. He finally comes back inside, and I head out. I am not gone TEN MINUTES... DO YOU HEAR ME TEN STINKING MINUTES... I have been home ALL DAY LONG with the kiddos... ALL.DAY.LONG. And Jake calls. What could he possibly want? I bet we are out of milk or something. Ohhhhhh no. He is excited. "What Jake, what?" I ask.

I am standing in the store, deciding on cake mix... WHAT DOES HE WANT.

Jake: "OMG... SANTA JUST CAME TO THE HOUSE."

Me: "What?"

Jake: "Santa. He just came through with a parade of fire trucks and brought goody bags to the door for the babies. I heard him outside, they were beeping the horns and stuff. SANTA WAS HERE."

And it's official. I hate Jake. I leave for TEN MINUTES. And Santa comes. Jake didn't get a single picture (he claims he didn't have a chance to lol). Santa drives through in this big ol' parade of fire trucks and gives my kids candy...WITHOUT SENDING ME A MEMO FIRST and I miss the whole thing.

Did I mention I was home ALL.FREAKING.DAY????????

So what did I do when I got home?

1.) I told Jake he could not discuss it. Instead I listened to Blake "Momma, SANTA.... truuuuuuuckkkkkk"

2.) I made a HUGE deal with Addison about it and told Addison, that because I am in fact the worlds best Mommy EVER, made a call to Santa to remind him (because we all know he sees you when you are sleeping and knows when you are wake, all that stuff, but is super busy) and told him I needed a visit to my house with a special treat for Addison because it as a big day for her and she was 30 days feeding tube free.

(I imagine in her head she is visioning me whispering on the phone late at night while she is asleep... "Santa, yes this is Addison's mom. Yes the one that you brought a Barbie Corvette for when she was five. Uh-huh, I am still mad about that because I wanted a Mustang NOT a Corvette. Yes Santa you can make it right. How you ask? Well as you've seen Addison has been a really good girl, and Blake has done a good job being a good boy, and well today Addison was went 30 days without a tube feeding, and I think you need to come and visit before Christmas so she knows that you KNOW. I don't care if you are busy. I expect you to arrive before bedtime."  And I further imagine that she thinks, "Mommy really is boss. She even went and personally gave Santa directions to my house, and that's why she wasn't here when he got here. She must have got stuck in traffic! My mommy rocks!".... Yes I do sweet Addison. Yes I do.)

A Special Note from Addison...

Hello to all our blog followers!

This is Addison and I wanted to share an extra special message with you all. See Mommy and I have been working extra hard on my eating. Mommy says we are doing something called "Tube Weening" where I learn to eat and not rely on my "tubie" anymore. I admit I am just a little sad about this because Tubie is my best friend and really means a lot to me. But I really wanted to be a big girl. My Pediatrician said that he really felt like it was a good time to let me try and give me a little room to grow, so Mommy promised we'd work really hard at it and told me that it was my choice. She would let me decide if I was ready to be a big girl and become an oral eater. Mommy said I shouldn't be scared and she would help me along, we would get through this together.

So we came home and she talked with Daddy and told him the news. And Daddy said he'd even help too. (I also think I remember something about a pony too). A month ago my journey to saying good-bye to Tubie began. I can best describe it as a marathon and sometimes a battle of wills. (I let Mommy think she wins them all.) But my Mommy and Daddy didn't give up. They kept trying with me. I am so excited to say as of today I have been eating and drinking enough food that I haven't needed Tubie..... FOR THE LAST 14 DAYS!!!! Yup I have went TWO WHOLE WEEKS without a tube feeding!

I saw my Pediatrician again today and he was so excited to hear the news. He checked my weight and said that I gained appropriately and was still following my curve. He gave me some new goals for me and Mommy to work on and said that as long as I stay on my growth curve and do not fall below the 10th percentile, I don't have to use Tubie. Mommy will take me back to visit again right before Christmas so I can tell him all about the progress we are making and let him know that I have achieved the goals he set forth for me. Mommy says we are officially on the path to saying "Bye Bye Tubie", just 165 days to go (maybe a little more, or less). That's right if I keep being a good girl and eat and drink by mouth (even when I am sick, which also means taking medicine by mouth) that in a little less then 6 months time Mommy and Daddy will likely get permission from my doctors to let me take Tubie out FOR GOOD!

He even told Mommy that she can call and cancel my appointment that she's been waiting a year for at the feeding clinic! The best part was Daddy got to be there today to hear the good news too. He was so proud of me that he took me out to dinner to celebrate! We meet with my GI doctor again next week for a follow up and I really hope she will be excited and proud of me too...

Can you believe it? First I got to share all the turkey and fixings on Thanksgiving with Mommy, Daddy and Blake and now I am on my way to big big things! Before you know it I'll be graduating college, walking down the aisle and starting a family of my own. Ok so Mommy says she just can't think about that part right now because she's not ready for me to be THAT grown up yet, and Daddy says no boy talk so shhh...

So long for now, I look forward to updating my loyal fans again later.

Love,
Princess Addison

Leaving the NICU...

Doesn't mean that all the preemie"ness" is gone. Preemie doesn't end at the NICU door, its much deeper then that. Many babies come home on monitors, oxygen, feeding tubes, trachs, medicines and still have plenty of complications; be it reflux, oral aversions, global delays, things much more serious like Hydrocephalus, hearing loss, vision problems including blindness.

Plus let's be realistic...for days, weeks, months a team of highly trained medical professionals have cared for your fragile, precious little one. Now they are trusting you to bring them home and have them thrive! It's terrifying, rewarding and exciting all at once. And lets not forget that sometimes (mom's of multiples) have the challenge of bringing one baby home while one stays behind.

For us we brought Blake home with oxygen (for feeding only) and a monitor (for continuous wear until further notice). While juggling Addison still in the hospital. Then she came home with a G-Tube. It worked out that Blake was coming off of the oxygen and monitor by the time Addison was coming home. I often joked that God knew I could only handle one situation at a time. But in place of Blake's equipment I know had a million and one things for Addison.

Addison is still G-Tube fed now at 20 1/2 months. And she still has some fine motor, and gross motor delays. Blake seems to have overcome most of the obstacles in his way and at 18 months we were blessed to find out that he no longer had any delays and would not longer be needing services and therapies. Some kids face more challenges once they start school or later, will that be Blake or Addison? Only time will tell.

I only know where we stand right now.

Some preemies need a lot more then my two have/or do.

And lets not forget that on top of everything else, a preemie's medical needs are different. Weaker immune systems, higher risk for more infections and hospitalizations. A normal cold, cough or RSV infection can cripple or kill a preemie.

By raising awareness maybe one day we can prevent another preemie being born too soon, and all babies will be born full term.

Advocating for Your Children...

I cannot stress enough the importance of being your child's advocate.

It takes strength and courage to stand up and do what's right not only for yourself but for your child. They look to you as their parent to make choices for them when they can't. I can promise you that this will not be easy. I can't promise that your choices won't be questioned, challenged or judged; because sadly someone somewhere will do this.

Several times during both my pregnancy and the twins NICU stay, I had to make tough choices. Choices I wouldn't have been able to make on my own without the support of my husband because they effected us both. I will forever be thankful that he and I are on the same page on many things.

From that ultrasound on that cold January day where doctors confirmed our fear. My water had broken and both babies were in jepordy. This was the ultrasound that also revealed that Addison "elegedly" had an ASD (whole in her heart) and Micrognathia (recesed chin to put it simply). The same ultrasound that brought one of the High Risk Specialists to the conclusion that we should terminate Addison, deliver her and attempt to put in a cerclage to save Blake. First Jake declined before I could even speak and stood firm that we would fight as long as Addison's heart kept beating and in no way would we chose to terminate her. That doctor had no problem telling us how much she disagreed and though it was foolish to put myself and Blake at risk. Second, I thought my OB was going to go off the deep end on the specialist and told us there was no way he would do what she was suggesting because that in itself was risking to me and Blake, and was even greater risk to loose Blake. He did warn us though that we could still loose Addiosn "naturually" and may have a stillborn baby. Our hearts broke. All we could do at this point was start antibiotics and then I would be sent home because we hadn't even reached viablity.

Fast forward to 24 weeks, I was admitted to the hospital one more time for steriod shots for their lungs in hopes that IF they should come early they would be better off from a respitory standpoint.  I had several doctors, friends and family telling me that now I needed to stay until I delivered. But I couldn't there was just no way, I couldn't handle it. I had 5 weeks to wrap my head around it and prepare myself but I knew in my heart that the stress of being "alone" in the hospital would cause me to go into labor. Jake understood my fears and we listened to each doctor give their reasons. While none of them could give me "the ok" to go home, one of them was brutally honest and told me that I was also right in thinking I was more at risk for infection by staying in the hospital and that going home could give us the best chance at survival. But legally he had to tell me to stay. We dissappointed a lot of people when we made the call to come home. Do I regret it... not really. Would I do it the same way all over again? I can't honestly say. But I do believe that staying home is what helped me get to 26 weeks. Had they kept me at 20 weeks, I do believe I wouldn't have made it that far.

In the NICU, most choices were not up to us. It was all about survival. Our first choice was "How far to go." Our answer was simple, do all you medically can and leave the rest to God. After that things were out of our hands again until it was time to think of alternate options for Addison who struggled to come off the vent. Our first MAJOR choice was did we want to give our daughter steriods to help get her over the hump. This came with the possiblity of increasing her risk for CP and developmental delays, the alternative was a Trach, increased lung damage and death. We opted for steriods.

After that, we were faced with the G-tube and Nissin surgery. Yes, No, Maybe, Give it more time? I armed myself with knowledge of it all and asked a million questions. Peds Surgery wanted to do one more test "just to be sure" because ofcourse the fact that formula oozing out her nose and mouth constantly wasn't enough, that was one test we refused. Why? Because it posed a huge risk for aspiration which could damage her already fragile lungs or worse. Surgery went well but recovery didn't.

Again Addison was struggling to be extubated. Her NEO at the time did not want to hear what I had to say about it and told me that her "45 years of medical expeirence as a doctor would not let me make decisions like that." I pushed back and so did she. This NEO was hell bent on Trach-ing her no matter how we, her parents, felt about the matter. (Keep in mind this NEO had only known Addison for 2 weeks and was not one of her "regular" NEO's. IMO, those 2 weeks didn't over rule the 4 months I had been her mother and watched all she went through.) I made phone calls, had the other NEO's consult, and made myself clear that this was not a button she wanted to push or a decison she wanted to make without our permission. If it meant I had to pay out of pocket for a transfer to another hospital I would do it. In the midst of this Addison had a MRSA flare up and this infection was raging through her body. I knew in my gut that if they cut another hole, in her airway at that, we'd loose her. And we felt like she had been through enough and if this was really the end she would give up. We were making peace with that, but we wouldn't torture her anymore, she suffered enough and had been in enough pain. Also worth noting that Addison was in a room with a handful of other babies, that all had Trachs...something didn't sit right about this. (Disclaimer..... this is just our situation and our story, I am not saying other's should make the same choice. This was the best choice for us.) At the same time they also wanted to surgically place an ART line (similar to a PICC line) to finish out a few short doses of antibotics, because she kept loosing veins. Nope, not happening, find another alternative it was too risky for us at this point.

Fortunatly the other NEO's were able to give a better history for Addison and educate this NEO. A few days later she informed me that she "just didn't know all that had to be done to extubate her before". I couldn't be kind at that point and I told her point blank, "There is a reason Addison was transferred with a chart and you at the very least could have read the cliff notes. Not to mention I told you this, not once but twice. I am sorry but I don't take well to being told what to do or that you will just do it anyway. That doesn't work for me and I honestly hope the next time you have an expeirence with a sitaution like this, you handle it a little better and professionally." Yes I was THAT MOM. And guess what, a week later Addison was off all oxygen, she went from the ventilator to a low flow cannula in less then an hour and she was being discharged a week and a half after that. The NEO was baffled. NEVER UNDER ESTIMATE THE POWER OF A PREEMIE. Just sayin'.

The day of discharge she wouldn't even enter the room to have me sign the paperwork. She had one of the residents to it and she must have thought she escaped me, but we met in the hallway on the way out. And had the nerve to tell me "Well mom WE made it." I kept quiet and kept walking with my baby in her stroller, on our way to freedom. I later found out this doctor was notorious for making parents cry and walking all over them. It's sad it really is. And I can't imagine where we'd be today if we had given in and just let her do what she wanted. I know that things could have ended totally differently even with the choices we made, but the fact of the matter is that things are the way they are for a reason.

I don't regret advocating for either of my children and we have always done what we thought was best for our children and our family.

RSV Season...Chapter 2

Cold/Flu and RSV season is rapidly approaching. For a preemie and their family this time of year can be stressful and fearful. RSV is a huge deal for a preemie, because of their fragile immune system and their premature lungs that are still developing they are not as well equiped to handle this virus. A common cold for me or you can cause actually be RSV and the symptoms can be so much more severe for a preemie.

According to the CDC, "When infants and children are exposed to RSV for the first time, 25% to 40% of them have signs or symptoms of bronchiolitis or pneumonia, and 0.5% to 2% will require hospitalization. Most children hospitalized for RSV infection are under 6 months of age." (Source: www.cdc.gov/rsv/about/infection.html  ) These numbers are likely even higher in high risk groups like preemies.

If you are preemie parent and this is your first RSV Season, precautions should be discussed in detail with your child's Peditrician and the NICU follow-up team (if you are a part of that at your NICU). Be prepared for some of the worst cabin fever you can imagine. These next few months could arguably be as stressful and nerve racking as that time spent in the NICU.

And if you are the family member of a preemie, please respect whatever precautions the parents are following. I cannot stress this enough. It's going to be tough on the parents, please don't try and make them feel guilty about protecting their preemie. Preemie's are different, exposing them to germs is not the way to build their immune system at such a young age. Their medical team will advise on the best situation to keep the baby healthy.

In our case last year the babies were home from the NICU for just a few short months before RSV season hit and we were advised by the NICU Clinic and our Peditrician to avoid crowded places, public or otherwise, stay away from anyone who was sick/had been sick or around someone who was sick within the last 5 days. We were told that we could go for walks outside but to keep the babies well covered and restrict contact from strangers or anyone who hadn't washed their hands or sanitized. They also got Synagis vaccines once a month for several months (Synagis is an RSV vaccine for very high risk infants/toddlers). I am sure a lot of people thought we were nuts but after seeing all they had went thru in the NICU I would have done it a million times more if it meant keeping them healthy and out of the hospital.

We asked their grandparents and anyone else who would be in close contact with the babies through their first winter to get a Flu shot and their Pertussis (Whooping Cough) vaccine, we made sure we were vaccinated too! No vaccine = no getting close to the babies (yes we were that serious). Their grandparents were amazing and made sure they were protected too. I cannot stress enough the importance of their support in all of this.

We limited visitors throughout the winter and avoided school aged children as well. Holidays were a quiet and small affair that was limited to Grandparents and their Aunt and Uncle A & R only. We even missed church services on Christmas Eve.

Oh did I have days where I thought I would go insane and looked for any reason to go the store or get out of the house when Jake came home from work. I think I actually resented him just a little tiny bit because he got to get out of the house every single day. I read books on Kindle during naps, tried to catch up on all my favorite tv shows, I am sure the house was cleaner then it had ever been, laundry never fell behind, but still sometime around December I was still bored out of my mind and going crazy. We moved the beginning of December and I am pretty sure I hold the record for unpacking and decorating... after all, all I had was time on my hands.

For their 1st Birthday, we branched out just a little bit and had a few people over to celebrate, it was nice. But it was so hard not to invite anyone and everyone espeically after all the support we had while they were in the NICU, etc. Typically RSV season runs November to Mid April/May here. We had to be extra viligent with Addison those last few months because she was having surgery for her Cleft Palate repair and she had to be healthy with no cold symptoms, etc for a few weeks prior, plus a cold that spread into more could damage her lungs and make being intubated/extubated challanging. As the weather got nicer we would take small, quick trips to Target or the grocery store, but I always tried to plan this for times when it wouldn't be crowded and often I took my own grandmother with me because she was the baby Nazi and NOBODY was touching her great grandbabies, she made sure of that. But it wasn't until the end of May before we finally felt "safe" enough to break free and start getting out, going to the park and hanging out with our friends.

Even taking these precautions the babies still got a handful of colds but they were short lived and thankfully never caused any major issues. But it goes to show how weak their immune system is. Just things like Jake carrying home germs from work or the few visitors, or heck even sitting in the Peditrician's office. They likely will still get sick but the hope is that with the right precautions we can limit the severity.

This year we won't be on such a strick lockdown. Our Peditrician said his reccomendations are for the twins to get their flu shot and try to avoid contact with anyone who is sick, try not to worry too much about public places. Basically we'll behave just like we have this summer with few exceptions. Some preemie's need more time or have other issues that warrant taking another RSV season lockdown, so again talk to you Peditrician.

For more information about RSV visit the CDC website: www.cdc.gov/rsv
For more informaiton about Pertussis visit the CDC website: www.cdc.gov/pertussis

NICU Nurses

I recently read an article written by a NICU nurse about "Caring for NICU parents". (Read the article, and it's comments, here). In short the nurse talks about how all to often it's easy to loose focus of the parents and how they are "patients" too in some sort.

I think she did a fabulous job of reminding her collegues how important a parent's role in the NICU can be, and how important it is not to loose sight of the fact that "we" as parents need support and care to. Be it taking the time to help a mom hold her baby for the first (or 31st) time or reassuring them, when they call at 2am, that their little one is just fine. I have seen a small handful of nurses (and even doctors) who often loose sight and focus soley on caring for the preemie (which yes is their maing job, but the letting the parents play a role is HUGE).

First I want to say that I am so lucky that I personally didn't encounter mainy of these situations during our 153 day (total) NICU stay. Most of our nurses were absolutely fabulous and treated me with such respect and compassion. They often offered to include me in the care of Addison and Blake, be it taking a temperature, changing a diaper, or giving a bath. The nurses who had Blake and Addison most often became like family to us. I never felt like I was bothering them if I called 1 time or 25 times during their shift. And I always knew that the twins were in great hands if I couldn't be there. Those nurses made me that comfortable and made a very trying & stressful time in my life that much easier to get through.

Yes we did have 2 nurses who were my least favorite and always seemed too busy to be bothered. And both of them were removed from their care team. I sat in the NICU and watched a nurse tell Addison "Oh behave and stop being foolish" and ignoring her "High Stat" alarm instead of turning down her O2 for over 15 minutes while she checked her email and sent a text message. This was the same nurse who gave me flack for trying to soothe Blake and not immediately picking him up and cuddling him when he was screaming his head off and I was trying to make a bottle, and as soon as it was made I stuck it in his mouth long enough for him to settle so I could pick him up. (This was once Blake was discharged and we were visiting Addison.) She had the nerve to tell me "You wouldn't get away with that behavior if you were breastfeeding." Thank you, nurse who knows nothing about me or my children, for  reminding me yet again how my body failed me. I could not pump enough breastmilk to feed the twins and breastfeeding did not work. But thanks for critiquing my parenting. Plus cut me some slack, I was new at parenting and he had only been home for a day or two at the most. I was doing the best I could at the time.

And who could forget about the nurse who told me "Blake was drinking to slowly and I didn't have time to be bothered so I just tube fed him the rest of his bottle." NOT COOL, especially when we were working toward all oral feeds for discharge. He had been doing great for a day or two and suddenly "you couldn't be bothered".

There are ways to address parents. No you don't have to walk on egg shells but be compassionate and considerate. No way I could let that nurse continue to care for him. Unfortunatly due to staffing issues, we also had her the night before discharge, but I was staying the night with him. I walked in for the night and this nurse tells me. "He had a Brady last feeding, they aren't sending him home." My heart sank and I almost lost my cool. Instead I took a deep breath and asked to talk to the NP, I had already knew about the Brady episode, and he was coming home on a monitor, never once during the day shift was I told that wasn't happening. The NP was equally confussed and assured me that all things still pointed to homecoming and even informed the nurse of this. Thankfully from that point forward the night went smoothly and yes Blake came home the next day.

This is not to say that I haven't made a judgement call too quickly. I remember in the beginning of our NICU stay one nurse had Addison for several shifts. I was so frustrated because I felt like this nurse was just poking and proding at my fragile baby more then needed. As I came out of the haze of everything that as happening, I realized that same nurse who I complained about and felt like was "doing too much" was actually a HUGE player in Addison's survival. At the time I didn't realize just how sick Addison was and that this was all "needed" for her to survive. Once it all clicked, I felt horrible, just horrible. I will forever be greatful for this nurse, and even more greatful that she gracefully accepted my apologies and forgave me for my ignorance. Not only is she an amazing nurse, but she is a beautiful person for handling it all with grace. (P.s. if you are reading this, I am also sorry that my daughter is as stubborn as me and gave you such a run for your money those nights/days.)

Remembering where we came from...

Today I decided it was time for a long over due visit to the NICU. Recently the hospital where I delivered the twins underwent some major renovations and the NICU was moved in to the "new" building and completely remodeled. When the twins were in the NICU it was "pod" style, one open room with beds along the walls all the way around. Now they have private rooms, including two "twin rooms". They just recently transitioned and we had been just waiting until things were settled to stop by and visit (and check out the new digs).

The new unit is absolutely gorgeous. There is a nice pleasant waiting room before you enter, and a view of The Mother's Garden. It was nice to see all the great nurses and NP's again and they were very excited to see the twins. They also got a good laugh and got to "aw" over Blake... The phone rang in the unit and Blake turned around and said "Helwoah", they melted. ;)  Once our visit was over we walked out to The Mother's Garden to take a pic and we also tossed in two pennies and made a wish for healthy NICU babies. I am glad we took the time to do that, because as soon as we came back in we bumped in to Dr. D. the NEO who was in the OR with me and on Addison's team. She also cared for them both for a good portion of their NICU stay. She saw the ugly and the good during their stay.

I will forever be grateful for the amazing miracles the medical team there did for us and they will always hold a place in our hearts.

It's hard to believe how little they were a year ago... I found this picture when I was flipping through the memory card on my camera... Too cute right?

And here's one from tonight, they really love their chairs.

Ignore the silly faces, they hate the flash.


Lately we've been spending some time coloring. It's a good fine motor exercise and they seem to enjoy it, so I was excited to buy them their first coloring books. (Note: we are still working on coloring in the lines. LOL)

And here they are showing off their work...

Blake got a little carried away and attempted to eat crayons drew on his mouth. He's thinking ("Great mom, blog this picture, it's gonna come back to haunt me one day...sigh").

I am sure I'll have lots more for you after this weekend... We've got Daddy all weekend for the first time all summer...TWO WHOLE DAYS...whatever will we do?!?!

Milestone Monday...

What's New:

Blake now knows "Thank You" and he is putting words together like "More Cookies" or "More Milk" , he is also walking ALOT more. He can do the distance from the door to car without my help.

Addison is starting to say more words, consistantly. Eating has been pretty hit or miss. Today she also had part of her Early Intervention Eval....it did not go nearly as well as I hoped. I admit, I let it get me down. She is currently 17 1/2 months (actual)  / 14 1/2 (adjusted) she is measuring at 11-12 months in fine motor skills. (Fine motor skill is the coordination of small muscle movements which occur in body parts such as the fingers, usually in coordination with the eyes. In relation to motor skills of hands and fingers, the term dexterity is commonly used. / Source: http://en.wikipedia.org/wiki/Fine_motor_skill).

Looking at her adjusted age, it's not that far off, it's not even "that bad" for her actual age. But looking at her actual age, it's a tough pill to swallow. It's hard not to compare her to Blake and looking at her side by side with him, I don't see where she is that far behind him. At the end of the day, it's one person's view on her development and, heck it's a lot better then what we thought we were looking at. AND let's not forget, she has continued to grow and develop which is HUGE. I mean hello, let me remember this is my baby who wasn't supposed to make it! And she did... and she is THRIVING, and closing the gap between where she should be and where she actually is. I have no doubt that she will get there in time. That doesn't always make it easier though.

I can't wait to see what they both learn to do or say next....

Family of Five...

No, I am not pregnant.  No we aren't currently trying, but it's the right title for this post.

When Jake and I got married, we talked about babies and we both agreed... Whatever happens, happens. Two years later, nothing happened and we starting to worry. That's when our journey truly began. We decided we would seek out infertility treatments and it took us another year and a half or so before we got to our first IVF. Yes a lot happened in between, that's a story for another day.

But one thing we talked about a lot was family size. I am the only (between my mom and dad) but have half siblings, all of which were grown and out of the house when I came along. Jake has one sister. I wanted 5, Jake said he'd start with 3 and we'd see, I agreed. When we got our IVF cycle we talked a lot about the number of embryos to transfer back. We knew it would be no more then 2, per our doctor. But 1 vs. 2 was up to us. On Day 3 the Reproductive Endocrinologist called, he wanted to wait until Day 5 to transfer. We had 4 embryos - 2 AA's and 2 AB's (Out of 9 that fertilized) he wanted to wait two more days and see if one of the AA's pulled ahead so he could give his best recommendation. That was ultimately when we decided that we'd put back 2. If we got to Day 5 with 2 beautiful embryos, they would both go back. We had been through too much to live with "what if's". Day 5 came and we still had 2 AA's and 2 AB's, 2 AA's went back and the other 2 did not make it to freeze.

Addison and Blake (yes both embryos took, we know that for sure), are our "meant to bes".

Since they have been born we have encountered a lot of comments regarding our family size. "Oh one of each, now you are done." "How perfect, the perfect family all at once." "Stop now while you are ahead, you already have your boy and your girl."

Yes we are beyond blessed. We have our boy and our girl and I couldn't imagine that any other way. But does it mean that we still don't long for a 3rd child to love? Does it mean that it's wrong to want just one more?

Will we ever have another baby? It's hard to say. It's highly likely that we will have to do another IVF cycle (please don't tell me about your friend's cousin's sister who did IVF then got pregnant on her own, yes it happens and I am not saying it won't for us either, but there are no guarantees). There are many other unknowns as well. Will I be put on bed rest again? Will we face NICU time again? How would we manage both of these things with TWO children at home? I know that I will have another c-section, there is no escaping that. I remember bits and pieces from all of my pregnancy, c-section, recovery and NICU stay that make me question if we could handle another. And what if the next IVF doesn't work? Could we handle that heartache?

I'd be lying if I told you we hadn't already went back to the Reproductive Endocrinologist. We did and I know where we stand today. We almost pulled the trigger and went forward. But then ... we stopped.

It gets harder to tune out that baby fever as the twins grow up, but we both still have emotional scars that haven't healed. We originally wanted our babies 2-4 years apart, but that won't happen now. Does it mean it never will? I am not sure. Part of me is scared to death that something will happen and I will leave behind my amazing husband and the two babies I already have. Part of us thinks we are being selfish by asking for more. What if our only miracle card was used to let Addison and Blake live?

I am not looking for answers. Nor am I looking to answer anyone. These things just needed to be said, for me...for us... to heal. Saying it some how makes it more real.

For now... for now we are complete. We can't imagine our world any differently, but that doesn't mean that I don't wish I could be pregnant again at some point (and go full term this time). A lot of it is missing out on what I thought would be too. It gets easier, but it's still there. I don't wish what we went through on anyone and never would.

I trust GOD knows what we can handle and I trust as always His Will, will be done in the end.