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Channel: Micro Preemie Twins: The Story of Holland & Eden
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Tonsils and Adenoids - Gone

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First of all, I really want to say a giant THANK YOU for all of your tonsil and adenoid stories on my previous post. They were really, really helpful in letting me relax a bit and feel better about our decision to go ahead with the surgery for Eden.

Eden's T&A surgery was last Monday, Nov 7th, with a hospital arrival time of 1:45pm. This was our first shot at an afternoon surgery, and it definitely wasn't pleasant keeping her without any food or drink after 6:45am. Morning surgeries are definitely the way to go if you have a choice!

She and Holland both got a little weepy and emotional that morning as Holland was getting ready for school. They were feeling nervous, worried, and sad that they were going to "miss" each other, and we did have some tears. Once Holland was off, they each perked up and were fine until the drive to the hospital. Then Eden started to get all teary and emotional again, and I overheard her telling her doll "Pinkalicious" that she was afraid that she was going to die(!). That freaked me out a little - but I didn't show it. I just gave her a lot of reassurance that everything was going to be fine and it was no big deal - at the same time reassuring myself that this would be the case.

Once we were at the hospital and she had met the team of doctors she seemed to be feeling okay and didn't cry at all as they took her back for the surgery. We asked to be brought back to recovery ASAP because we were worried about how she would be waking up without her hearing (cochlear implant). She wouldn't be able to hear what they were saying, and we didn't want her to be afraid.

The surgeon was unable to do a "typical" T&A with Eden because the use of cautery (or anything electro/magnetic) during surgery can interfere with the internal component of her cochlear implant. Instead, they did what they called a "completely cold" procedure and we chose an ENT who has experience specifically doing the T&A on kids with cochlear implants. My understanding is that with this type of procedure there in increased risk of bleeding during surgery, but maybe less pain in long-term recovery. We asked to be kept overnight for observation (to watch for bleeding and to keep her hydrated), and they agreed to keep her.

The surgery itself took less than an hour, and we were brought back right away. The hour following was by FAR the worst part of the whole experience. She had a very difficult time coming out of the anesthesia, felt sick to her stomach, and was literally writhing in pain. At the same time she was figuring out that it was painful to swallow, breathe, and talk. It was awful to see and brought back a whole flood of memories and emotions. Once we finally got the right amount of pain medication on board and I picked her up and cuddled with her in the rocking chair, she was able to relax.

Four hours later they wanted to wake her up and start her on oral pain meds so she could "prove she could take them." Since we were staying overnight on an IV, I insisted that that first dose post-recovery be given in her IV, and that she be allowed to sleep. (This is where all of our NICU/hospital/surgery veteran experience proves handy;)) We agreed to wake her after a good 8 hour stretch of sleep to start the oral meds. This was the 2nd worst part of the experience. I got them in her, but it wasn't fun. Luckily it got easier each time. Even though the medicine was disgusting and she hated it, we were at least able to reason with her (and have a tasty drink handy to help her wash it down).

This surgery was done at our local University hospital, rather than at the hospital where we spent plenty of time in the NICU and pediatric unit, so it was a bit of a foreign environment. We had to share a room rather than having our own space. As (bad) luck would have it, the girl in the bed next to Eden was moved out at 10:00 pm. At approximately 2am a parade of people began coming in the clean the room, move furniture around, and bring in a new patient. The best part was when I woke up to see them actually taking off the foot of Eden's bed and PUTTING IT ON THE BED so they could move the other bed out of the room. Insane. I seriously think someone should do a Saturday Night Live skit about what it is like to "sleep" overnight in the hospital. It should start with a doctor telling a patient to make sure they get enough rest so they are able to heal..... I got a combined total of about 2 hours of seriously disrupted sleep. I finally just resigned myself to staying awake because it was less painful. Lucky for us (and for them), Eden is deaf and wasn't bothered at all by the noise. Between that, and the fact that it was just one night, I was able to find the humor in the situation and let it go.

At 5am the morning following surgery Eden woke up saying she was hungry and proceeded to eat a whole cup of vanilla hospital ice cream before falling back asleep. By 8:30am she was asking for scrambled eggs and french toast. One of my biggest concerns going into this was regarding weight loss and regression in eating, and I am happy to report that this really has not been a problem.

Another thing I stressed about was the expected "voice change." Eden has always had a really soft voice, and I was concerned that any additional muscle weakness resulting from the surgery would make her voice even softer and more difficult to understand. This hasn't been the case. Her voice is definitely different...maybe a little more nasally and a little bit "funny" sounding, but she is still intelligible and maybe even a little louder?? It will be interesting to see how this goes as she heals.

On the pain scale with the faces, Eden was rating her pain at 10 the first day. We were down to 8 by day 2 (between medicine doses), 4 by day 3, and 1 or 2 by day 4. At day 5 she told us she was a 0 and we weaned her off of the Lortab (vicodin) and onto straight Tylenol. Yesterday we increased the time span between doses to 6-8 hours, and quit waking her up at night for meds.

During the very first night I could hear an improvement in Eden's breathing during sleep...even with all of the swelling and gunkiness in her throat. The past couple of nights she is SO silent when she sleeps that we have to get really close to her to make sure she is still breathing! This alone is a great relief. We are very hopeful that this winter will bring fewer throat infections, less sickness overall, and an easier recovery when she does get sick. Only time will tell.

Today Eden went back to school. It was so nice this morning to walk her in and to hear all of her little friends exclaiming, "Eden's back!" They all smiled, waved, said hello, and a few came up to give her high fives. The best part was the huge smile on her face when she realized that she had been missed, and that everyone was happy she was back!

Prematurity Awareness

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November 17 is Prematurity Awareness Day, AND the day that we celebrate 7 years since my amazing girls came home to be with their family after spending the first 110 days of their lives in the Neonatal Intensive Care Unit. There is not a day that goes by that I am not reminded of all that they endured to survive, and the lingering effects of their much too early birth. For better or worse, we have learned so much on this journey and are forever grateful to have these sweet and wonderful kids in our lives.

Happy Homecoming Day to my loves!

We've come such a long way...

Christmas in Review

The Highlight of 2011

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2011 was a big year for us. A good year.

So many things unexpectedly fell into place, making a dream that seemed a remote possibility become reality.

We moved into a new home.

Not just any home mind you, but a home that somehow meets all of our major criteria, and is ALREADY accessible for Eden. It's a spacious ranch, with extra-wide doorways and hallways, no step-up or downs to any room, and a ramp in the garage so Eden can drive her power chair into the house with room to park it. No more getting ready for school in the cold garage with a frozen lumpy seat (her powerchair has a gel cushion)!

So we found a really great house that immediately felt like home - even before we were fully moved in. It is nothing extravagant, but is very functional, practical, and modest - like us.

Moving is tricky business. You can check out the house, and make sure it is what you are looking for, but there are a lot of things that you can't fully know until you make the move. I drove through the neighborhood numerous times, and visited the school and met with the principal, but until you make the move it's hard to really know how things will mesh with new neighbors and a new school for your kids. Having children with special needs makes these kinds of things even trickier to navigate. You learn to expect some give and take. You hope for neighbors and teachers, school staff, kids, and other parents who will show true kindness and acceptance of your kids, but you also prepare yourself for a full range of responses and get set to advocate and educate as necessary - hopefully in a positive way, but always on high alert.

We got lucky. Our neighbors are great and have been very welcoming and kind to our family. The school is wonderful - overall climate has been very accepting. The principal is a compassionate person who listens and is a proactive problem-solver. The girls teacher is very much a "Professional." She knows her stuff, and is willing to go the extra mile to make sure that her students learn. She zeroed right in on H and E's strengths and weaknesses, and has stayed in communication with us regarding strategies that seem to be working or not working, and what things we need to be putting in some extra time on at home. The girls have made friends - we have already been to two birthday parties and have had a couple of "play-dates." The parents have also been very warm and accepting - several have approached me to tell me how much their kid loves Holland and Eden.

All in all, I couldn't ask for better.

A Little Snow...Finally!

Half Birthday!

Alert the Media 2012!!!

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That's FORTY pounds! Eden weighs forty pounds!! She has doubled her weight in 3 1/2 years and gained 10 pounds in the past two years (funny she is wearing the same pants in that old photo), rightfully regaining her title as the Biggest Sister. Holland is weighing in at 36 pounds these days...or should I say for the last 6 months.

Eden has been eating like a champ lately, and working out at EuroPeds for the past two weeks as well. Everyone knows that muscle weighs more than fat, right? And she is one tough girl!

Guess What?!?


20 Weeks...

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Is knowledge power? Or is ignorance bliss?

For sure, it must be a bit of both, but I can tell you that I have certainly longed for a bit more ignorance with this pregnancy!

Last go around I felt invincible. It was all I knew. Women all around me were having healthy, full-term babies by the dozens. I had training as a birth doula, and had attended a few births. I had a strong head about what I wanted and what I didn't want. I thought I knew so much. I wanted a home birth, all natural and beautiful, with no medical intervention at all. I wanted to do it the way women have been doing it forever. I wanted to prove my strength as a magnificent woman, made to give birth. I researched and read everything I could get my hands on.

I skimmed past all of the information about preterm labor, prematurity, birth defects, and disabilities, because it never crossed my mind that that could happen to me. And then it did.

My experience with the birth of Holland and Eden completely changed everything in my life. It changed my entire world view. It has made me a wholly and completely different person than I was before, and would ever HAVE been if things hadn't turned out the way they did. For better AND worse.

Our approach to this pregnancy has been very obviously different. No more visions of natural homebirths, bliss, and invincibility. More like the opposite. Very medicalized, closely monitored, and worried beyond belief about Every. Little. Thing.

I had 3 early term (prior to 8 weeks) miscarriages before I got pregnant with H and E. So this time around I worried incessantly for the first 8 weeks that I would miscarry. Once I got to 9 weeks I started to feel a wee bit better in that regard, but then all of the pregnancy symptoms set in. Nausea that lasted most of every day, extreme exhaustion, moodiness, and guilt for not being able to keep up with my normal daily activities. John and I had decided not to share the news with anyone until after our 12 week scan. John has been going through his own stress and angst over the whole pregnancy thing. He did not want to talk about it. So...I was dealing with it all pretty much on my own.

Then came the 12 week scan. I allowed myself to get all giddy about finally telling everyone and worked out different scenarios in my head for how we would go about it. Because of course, I was completely expecting that the 12-week scan would be normal. And then it wasn't. Sigh. As if the looming possibility of extreme prematurity repeating itself weren't enough for us to deal with.

The 12-week scan showed a slightly increased nuchal translucency (2.8), and "possible" septation, which "could" indicate the "possibility" of cystic hygroma. "If" there is a cystic hygroma, then there is a greater than 50% chance that the baby has a chromosomal abnormality, and if NOT chromosomal, there is an even greater possibility that there is some other genetic abnormality - most likely of which is a heart defect. All of this prefaced with a GREAT BIG "maybe" and all of the wind gone out of our sails. Just like that.

Again I ask myself the question, "Is knowledge power, or is ignorance bliss?"

I spent the next 6 days crying and arming myself with more knowledge. Next step, CVS scheduled. I didn't want it to go this way. Weighing risks, agonizing over these kinds of decision. What to do? We meet with a genetic counselor, sign consent for the CVS, and have another ultrasound. This ultrasound looks perfect. NT is normal, NO septation, and no cystic hygroma. Again the question. To do the CVS or not? As life would have it, we didn't have to make this decision because my placenta was located in a position as to make the CVS impossible. Couldn't do it. This doctor says, "If you came in off the street today for your 12 week scan, I would say Everything Looks Good, and send you on your way." But, we can't discount what the first doctor saw the week prior...still have to consider those results...yadda yadda yadda. Next step bloodwork.

Blood work comes back normal. Finally. Something positive.

I start feeling better physically around 14 weeks. Another positive.

Then we go in for another scan at 15 weeks. Here we go again. Choroid Plexus Cysts. Most likely normal, but considering the results of the 12 week scan could be blah, blah, blah. So now what?

With much trepidation we decided to go ahead with an amnio. This was done at 16 weeks. Emotionally difficult, but physically not bad. Detailed ultrasound done prior and everything looks and measures great, no other markers for any abnormalities or problems. Amnio goes smoothly. Results are normal. Good news.

Started 17P hydroxy progesterone injections at 16 weeks, and will be getting them weekly through 36 weeks. Biweekly (at least they are supposed to be biweekly) cervical measurements also started at 16 weeks.

At 18 weeks I started feeling abdominal pain, cramping, discomfort, -not exactly sure but these could be contractions- type pains. On March 30, I made my first trip to triage and was diagnosed with a UTI. 10 days of antibiotics, infection cleared up. Back at doctor 5 days later because still have these uncomfortable feelings. They check my cervix again. Cervix still looks good. High, closed, and "hard-as-a-rock." "It's a beautiful cervix," they say. But I still have a hard time believing them.

I will have a scheduled c-section between 36-37 weeks due to the fact that I had a classical incision (vertical rather than horizontal) with H and E. The risk of uterine rupture is too great for me to go beyond 37 weeks. The high-risk doctor said last week that she "fully expects" me to go the full 36 weeks. Last pregnancy was twins. Twins are a "whole different ball of wax."

I really want to believe her.

I am continuing to have some occasional minor cramping and 4-5 this-feels-like-a-contraction each day. Could be normal. I remember feeling these same feelings before I went into labor with the girls. Could have been normal then too.

But I guess I don't know what normal is...

March for Babies 2012

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It's that time of year again, and Holland, Eden, John and I will once again be walking with Team Holland and Eden in March for Babies to raise money for the March of Dimes. As you all know, this is a cause that is very near and dear to our hearts. 

Holland and Eden survived their early birth and are fully enjoying their lives today thanks, in part, to advances in neonatal medicine made possible by the March of Dimes. The girls face lifelong challenges as a result of their extremely premature birth, but despite the obstacles that we continue to face, we feel so lucky to have them in our lives. They are growing and thriving, and bringing such joy and inspiration to everyone they meet. They will be 8-years-old this summer and are finishing up an awesome first grade year in a few short months! 

It is our hope that with continued research into causes and prevention of pre-term labor, as well as improved treatment options for those born too soon, fewer babies will face the devastating long-term consequences of such an early birth. We will continue to honor the lives of Holland and Eden as we walk, but this year we will also walk for another reason... Our family is looking forward to welcoming a new baby GIRL, due to arrive in August! Armed with a great deal of knowledge, and the advantage of advances in medicine and close monitoring of this pregnancy, we are very hopeful that we will make it long into the summer before our new baby makes her appearance. 

With your help, Team Holland and Eden has already raised over $28,000 for the March of Dimes. We hope to continue our tradition of being one of the top family teams in our region and we are setting our sights high! Please visit my personal page to make a donation and to assist me in achieving my goal of helping to save babies! 

 Thank you so much for you support in our fund raising efforts over the years, and thank you in advance for supporting Team Holland and Eden as we walk this year! 

Billie, John, Holland and Eden (and Baby C!)

Hitting the Streets

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Thank you so much to everyone who has already donated to support Team Holland and Eden 2012.  You guys rock!

Just 12 hours left until we hit the street in our 7th (OMG could it really be??) March for Babies.

We need your help to reach our goal.  Every little bit helps.  Make your donation now!


Memories

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Today I am 23 weeks and 6 days pregnant. On this day, during my pregnancy with Holland and Eden, I started having contractions 2-3 minutes apart. I went to L&D and found out I was already dilated to 4 and having twins. I kept them inside for 4 intense days before they were born much too soon. And so it began...

I can't even write about it without crying. So many memories and emotions that I have spent the last 7 years coming to peace with are all right at the surface as I relive those days in vivid detail.

On a positive note, I am feeling good. Loving my pregnant body and the feeling of a tiny baby moving inside of me. It's surreal to imagine it ending so soon. I'm still adjusting to the idea of being pregnant and having another baby in the first place!!

24 weeks and 3 days

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Holland and Eden at 24 weeks and 3 days...



Baby C today at 24 weeks and 3 days...


It was a Happy Mother's Day.

27 Weeks

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Out of the "micro"preemie woods, and Hello THIRD trimester!  So nice to finally meet you...


Random Acts of Cuteness


Rite of Passage

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Looks like the tooth fairy will finally be visiting our house for the first time tonight!!!!


Eden is beside herself with excitement :-)

Fancy Girls!

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We attended our cousin Jenny and her new husband Jake's wedding reception on Saturday.  The girls were SOOO excited for their first really "fancy" occasion with new dresses, new shoes, a DJ, a dance floor, and disco lights!  Added bonus that they got to stay up waaaaay past their bedtime!!  They were so funny talking about it all week and counting down the days until the "dance party."

They both had a ball, and both have some great dance moves!  Holland crashed a little early, around 9:00, but could still be coerced back onto the dance floor when one of her favorite songs came on.  As always, she was a little shy, and was happiest when Mom was out there with her.  Eden, on the other hand, rocked her pony walker on the dance floor ALL NIGHT LONG.  She danced to every song, even when it was just her out there.  She tried the hustle, and was happy to be in the center of the circle dancing with complete strangers.  That girl is a ham, without a shy bone in her body.

I love watching both of them having new experiences, all giddy and full of joy and excitement over the simple things in life.  It makes my mommy heart feel super happy!

Last Day of First Grade!

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Sniff, sniff.  My babies aren't babies anymore!!!!!!!!!!!!  I think I am going to need another one ;-)


The girlies had such a great year this year.  They learned SO much, it's actually really quite amazing.  We were so lucky to have a really great teacher, and of course, Eden's awesome helper who has been with us for the past 4 years.  Thanks to all of our (teacher, helper, parents, Nana, and of course, Holland and Eden)  hard work, both girls are now "readers."  Their math skills (definitely an area of relative weakness) have come along by leaps and bounds as well, even though there have been times I wanted to bang my head against a wall trying to work on counting money!!  They are showing a much better grasp of the number line and number concepts, and are able to do pretty well with basic addition, subtraction, simple fractions, and yes, even money.  They made lots of great friends, both have a couple of "BFFs," and I think those friendships will continue to grow over the years.

We were sad to find out that Holland and Eden's teacher is moving to another school in the district, so won't be "looping" with the girls for second grade as we were expecting.  However, I am hopeful that next year's teacher will be wonderful as well and we will continue to progress.  It's just going to be a lot more adjustment in the fall than I was originally hoping for - mostly for my own sake.

But, I am going to put that worry out of my head for now.  It's SUMMER VACATION time!!!!  So much fun to be had between now and August 3 when Baby C is scheduled to arrive (and of course, more fun to follow).

In the words of Max, "Let the royal rumpus start!

Bike Riding Superstar!

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From the PEAC newsletter...

"Eden E. is our super star of the week! After showing up on Monday with an adaptive tricycle to assessment and wowing the staff with her abilities to steer and her endurance on that bike, on Wednesday she was ready for a bigger and better adventure. After taking a few laps around the parking lot in her adaptive bike, she asked to ride the tandem bike. With the help of mom, we were able to get her out of her adaptive trike and onto the back of a family tandem. We took a few laps in the parking lot and then were off to ride the loop around the playground. Now, Eden has set her sites even higher and wants to try to ride the tricycle and take longer tandem rides into the community. Great Job, Eden! We are looking forward to see how many more gains you make this summer! "

Happy 8th Birthday!!!

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For their 8th birthday, Holland and Eden chose to have a Pokemon themed party at the beach with our family. I was hesitant to commit to any major party plans just days before our new baby was scheduled to arrive, but all was well and we were able to pull it off!

 The girls are majorly, MAJORLY, M.A.J.O.R.L.Y into Pokemon these days, and received as gifts every Pokemon toy that has ever existed. They were in heaven. I was elated to have one last *Hurrah* for the "big" girls before they have to start sharing their bday parties with a little sister.






Last photo as a family of four!
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