Wednesday, March 26, 2014

So Much to Say

Daddy Daughter Dance 2014
Tomorrow morning Eden will be having surgery to hopefully improve her voice and give her better volume.  In January she was "officially" diagnosed with a paralyzed left vocal cord; a result of pda ligation surgery done when she was 12 days old.  At the time of her pda ligation, we were told there was a 20% chance that her vocal cord could be paralyzed.  We have since learned that with micropreemies (babies less than 2 pounds) this chance is actually much higher (perhaps as high as 67%).

Eden has always had a very quiet voice.  As a baby, when she would scream until her face would turn red and tears would flow, but no sound would come out except for some squeaks and hisses.  We have always suspected that her cord might be paralyzed, but we had so many other things on our plate that her quiet voice was not a top priority.

Now that Eden is older, the impact of not being able to speak up is becoming more apparent.  At home or in quiet settings when we are in the same room we can hear her.  It is tricky in situations where there is a lot of background noise, like in the car, restaurants, pool, as well as when she is across the house or in another room.  Sometimes we really struggle to hear what she is saying and she has to repeat herself a LOT.  It is also a struggle in social situations at school and in the classroom.  Eden is very social and makes every effort to participate in conversation, but she often has a hard time hearing what everyone is saying (because of only one cochlear implant), and they cannot hear her when she responds.  Kids are busy, and many times they do not take the time to listen closely or wait for her to repeat herself.  This has become more isolating over the years and she tends to gravitate now to conversations with adults who will make more of an effort to hear her (and make sure she hears them).

We initially learned of the reinnervation surgery from our friend Abby in Philadelphia.  Her daughter Hallie also had a paralyzed cord from pda ligation, and they were lucky to be near a voice clinic and one of the doctors who specializes in this field.  Hallie had the surgery over a year ago and they shared their good success with us. Abby was kind enough to talk to Hallie's doctor and surgeon about Eden, and she referred us to someone local who could help us.

Dr. Brown at the University of Michigan hospital did a scope of Eden's larynx in January and confirmed the diagnosis.  He was very optimistic about us pursuing the surgery for Eden and expressed that he feels that there is good hope for a positive outcome.  Hallie's doctor in Philly, Dr. Karen Zur stressed that this surgery should be performed within 7 years of injury, and Eden is 9 1/2.  This was not mentioned by our doctor in Michigan, but I feel glad to have the knowledge so I can have realistic expectations.

The reinnervation surgery will not "fix" Eden's vocal cord or make it move again, but over time it should help give it some additional bulk and tone, and prevent it from further atrophy so that Eden can get better vocal cord closure and more volume from her voice.  The reinnervation will take 6 months to a year to get full benefit, so at the same time Eden is having a vocal cord bulking procedure done which should give her some immediate results.  (Coincidently, another micropreemie friend Kaitlyn is having the same reinnervation surgery the day after us in Utah.  Eden and Kaitlyn had a fun Skype session this past weekend to hear each other's voices and chat about their upcoming surgeries (among other 8 and 9 year old topics of conversation:).

Once Eden has had a chance to recover from this surgery, we also have plans in the works for her second cochlear implant surgery on April 21st.  I just got confirmation on the date today, and am very happy to have worked it out on the first day of spring break so Eden won't have to miss any more school!  Eden's quiet voice is but one piece of the puzzle.  She also has a very hard time hearing other people in situations where there is a lot of background noise, like at school.  She has to concentrate so hard to filter out voices from background noise, and it really impacts how much she is able to catch from conversations going on around her. We have done a lot of research put a great deal of thought into this, before deciding that we need to pursue this option to help Eden hear optimally so she isn't missing so much.

It is really, really stressful on John and I (and Eden of course) to go through all of this after so long without any surgeries or hospitalizations.  We are feeling very apprehensive, rusty, and out of practice.  I would love to keep my kids safe in our bubble and never worry about any of this again, but life moves on doesn't it?  We are really, really hopeful that doing these surgeries will improve Eden's quality of life by making communication easier for her in the long run, particularly in light of the other challenges she faces.  Eden is very social and wants her voice to be heard.

She has so much to say.

Daddy Daughter Dance 2014


Daddy Daughter Dance 2014

Wednesday, December 25, 2013

Wednesday, December 11, 2013

Catching Up

While adjusting to Life with Vi, Holland and Eden rocked second grade, and the beginning of third.  We were so lucky to have a kind and amazing teacher for them last year, along with the continued support of the rest of the team.  They learned so much, and were able to work through some of their challenges.  They were also really lucky to be in a class with a great group of about 10 girls who became good friends.  It was pretty much smooth sailing over the course of the year.

This year has gotten off to a good start as well. We chose to keep them together in the same class once again.  They have two teachers who are splitting one job, but both seem to be good solid teachers and the girls don’t seem to have had any problems adjusting to the unique schedule.  Our biggest disappointment at the beginning of the year was that none of their girlfriends from last year are in their class.  I might have been more sad about this than they were.  They have made a couple of new friends, but we have also had some “girl drama” that we had been lucky to avoid up until this year.  It seems to be working out ok for now, and both girls are happy at school and seem happy when they get home.  We had conferences last week and their teachers had a lot of positive things to say about their personalities and behavior at school, which is wonderful to hear of course.  Both continue to struggle with math.  It is coming along, but it certainly doesn’t come easily.  They are both great readers and enjoy reading, but sometimes have a hard time talking about, summarizing, or explaining what they have read.  This makes it tricky to know exactly how much they comprehend when they read independently.  I am certain this skill will come with time. 

Eden loves to write, and has many fabulous ideas and stories to tell.  The physical act of writing continues to be a barrier, and we are always working on ideas for helping her get her ideas onto paper the most efficient way possible.  She has an ipad at school, and her aide often helps as a scribe, but a lot of the time Eden just wants to write it herself.  She is allowed to do this much of the time, but it slows her down and even though her handwriting has greatly improved, there are still times it is hard to decipher what she has written.  Eden has patience and determination in abundance, as well as a natural curiosity about the world, and will work diligently to achieve her goals.  Her current project is making rubberband bracelets using a loom.  This is all the rage at school for girls her age right now, and when we saw it at the store she HAD to have it.  We bought it for her assuming she would probably not be able to do it independently, but I enjoy that kind of thing and would be more than happy to help her.  Well, she once again proved us wrong and worked at it for a day or two before she was able to start making bracelets all by herself!  She is very proud and is working with dad to launch her very own website to sell some of her creations.


Holland also has good ideas and likes telling stories, but she really doesn’t like to do a lot of writing.  It continues to be a struggle for her to get started and to stay focused long enough to complete many tasks.  She does not have a lot of patience for tasks that require sustained mental effort, particularly writing and math.  She continues to have infinite patience and enthusiasm for video games and pretend play.  Her passion for Pokemon has dwindled somewhat over the past couple of months, to be replaced for the moment by Harry Potter (we just finished book three) and Animal Jam.

Both girls are doing Brownies again this year, and finished up two seasons of Miracle League Baseball at the beginning of October.  Holland started Choi Kwang Do lessons twice a week last February and recently tested for and earned her gold senior belt.  She is doing an awesome job with that!  Eden continues to ride horses 1-2 times per week at two different barns, one for hippotherapy and one therapeutic riding, though they are currently on hiatus for the winter.  Holland went to a week long drum camp over the summer, and has taken a few drum lessons.  Eden has had one piano lesson with her aunt (John’s sister) and is interested in continuing as we have time and can coordinate schedules.  Eden went to a sign language camp over the summer and really enjoyed that as well.  She would love to take lessons or a class to learn more but I just don’t think I can cram one more activity into our lives at this point.  Not and still maintain my sanity!


There are still so many holes in the blog due to the super busy nature of our lives. 

I never talked about the horrible illness Eden had last March that caused her so much pain and loss of function, and brought our lives to a major standstill.

I never talked about us looking into the possibility of a second cochlear implant for Eden, starting the process and the necessary testing. We are still on that path with another appointment coming up soon.

I never talked about ordering and receiving Eden’s new pink power wheelchair, a Permobil M300, and its pros and cons. That was quite a process (and still a headache).

I never talked about going to the Abilities Expo in Chicago in June, and all the cool things we saw and the nice people we met.


I never talked about our super-fun summer vacation to Michigan’s Upper Peninsula, Mackinaw Island and Tahquamenon Falls.  It was our first vacation as a family of five!



I never talked about Holland finally hitting a growth spurt and surpassing the 40-pound mark!  I also didn’t talk about her newfound love of mac-and-cheese for breakfast…everyday.  Who knew?

I didn’t talk about John and I celebrating our 15th wedding anniversary and our 20 year anniversary of being together as a couple.


What a journey it has been!

Sunday, December 01, 2013

Life with Vi



Somewhere around the 5-month mark Violet turned into a super-delightful, good natured, sweet and silly baby.  She is very affectionate and loves to give hugs and kisses to her family.  She pats us on the back and says “Awwwwww.”  She is a little mimic, with her head-tip, vocal intonations, and hand gestures, acting like she is having grown-up conversations with her jibber-jabber voice. 

She has been a slow-starter with eating; not expressing a lot of interest at the 6-month mark when we started introducing some foods.  She didn’t want a whole lot to do with food until closer to 9 or 10 months, and preferred to self-feed over baby food.  Even now, it is somewhat hit or miss.  Some days she feels like eating a lot, and other days she throws everything on the floor and wants nothing to do with it!  She is a fruit-head, and will almost always chow down happily on blueberries, strawberries, watermelon, and grapes.

She still loves to nurse with Mama.  She tugs at my shirt, says, “dis,” and signs milk when she wants to eat.  She is an active girl, often trying to stand, bounce, and do headstands while she is nursing.  She never had a problem going between bottle and breast, but if Mama’s around that’s what she wants.  She sleeps in our room in her porta-crib, and still wakes at least once a night to nurse, though most night it can still be 2 or 3 times…or a million.  I would love to sleep through the night again some day.

Here’s some shocking news for you…she is small for her age!  She was holding her own, near the bottom of the weight growth chart until 6 months, then at her 9 month appointment she fell right off to the 0 percentile.  Recently, at her 15 month appointment she was still at 0 for weight, but near the 20th for height, and near the 70th for head.  Big brains, little body.  It runs in the family. She currently weighs about 17.5 pounds give or take (isn’t that a hoot…I don’t even really know exactly).


She has also been a slow starter with gross-motor skills.  At her 9-month physical the doctor expressed some concern that she wasn’t crawling yet, and suggested that I contacted early intervention to have her evaluated.  I didn’t, but I did have 2 of Eden’s PTs look at her informally.  They both agreed that she looked fine, everything was coming along “within normal limits”, and they gave me a few suggestions for things we could do to help her along.  She started crawling around 10 months and walked just before 15 months.  That would be 9 and 14 months if you account for her prematurity, but whatever, right?

What she lacks in the gross motor area, she makes up for in cognitive development and language.  At her 12-month appt we counted about 20 words that she was able to say. By her 15-month appt we lost track.  She talks so much and gains new words and concepts every day.  She knows most of her animal sounds (including “What does the fox say? ding, ding, ding, da-ding da-ding ding”), many body parts, hand motions to songs, and names of family members.  She is learning tons of signs now, and recently learned to sign “nurse, please,” making it impossible for me to tell her no.  She tells herself, “no, no” right before she does something naughty.  She says “caca” before eating gross stuff off the carpet.  She loves to empty all of our cupboards and cabinets, and the only time we have we have peace and quiet is when she is happily emptying one of her “stations.”  She is SO LOUD!  Her voice demands to be heard.  She screeches so loudly that we are (jokingly) afraid our ears will bleed.  Holland and Eden still sleep with a monitor in their bedroom because we cannot hear them when they call for us, even though they are right across the hall.  We can hear Violet clear across the house, no monitor needed!

She is gorgeous.  We see a little bit of each of us in her, but she has a look all her own.  She has big, bright eyes that strangers always comment on.  They used to be gray, but are turning brown.  She has shaggy, stick-straight hair, with beautiful blonde highlights that hangs right in her eyes.  The moment she realizes there is a barrette or ponytail in her hair she yanks it right out.  She has 10 teeth (6 on top and 4 on bottom), and it seems a couple more are on their way soon.  4 of her teeth were in at 6 months, and she has the most adorable toothy grin.

She is silly, silly, silly, and makes us all laugh every day with her antics.  She is strong-willed and demanding, and annoys us every day with her antics as well (especially the food-throwing).  She is most of all, extremely lovable.  She adores her sisters and they adore her…mostly…when she isn’t grabbing their glasses, pushing all the keys on their computer, or screaming loudly at the dinner table.  Eden enjoys carrying her on her lap in the baby bjorn when driving her powerchair.  Holland enjoyed walking her around holding her hands when she was first learning, and now enjoys playing “chase” with her.  They both love watching her learn new things, and giggle at her silliness.


There have been moments of jealousy and frustration because she does demand a great deal of attention. Holland and Eden were used to being at the center of our universe for 8 years, so it has been an adjustment for all of us, but all in all, our lives have been enriched by having this little ball of energy and light join our crazy family. 

We wouldn’t want it any other way.

Sunday, November 24, 2013

The Aftermath: A Reflection

My baby girl is now a toddler. Sigh.

video

Violet started walking the week of Halloween, shortly before she turned 15 months old.  Now, three weeks later she has gained a lot of confidence and is trying to run!  I am glad that she was slightly on the older side for reaching this milestone, because it gave me a little more time to absorb her babyness.  The rate at which time passes has me feeling so wistful these days.  I have moments of anxiety with this feeling like we are hurtling so quickly toward middle school, high school, college, old age, and beyond.  I try to make an effort often to slow down, take a breath, and allow myself to be fully present in the beauty of the moment.  It puts a lump in my throat just to sit and type this.

This blog certainly served it original purpose in providing a forum for me to keep our families and friends apprised of Holland and Eden’s progress in the NICU and beyond; but it turned out to be so much more.  It allowed me to keep a beautiful log of our milestones.  I find myself frequently looking back to remember certain details when the girls ask questions, or when I am trying to provide support or information to someone else who finds themselves in our shoes.  It is really so priceless to me now, because of how quickly our memories fade. As much as I try to soak them up, nurture them, and keep them with me; they are fleeting, and it helps to have them captured here.  This blog has also helped me to create a wonderfully supportive network of friends and acquaintances in the computer who have helped us on our journey.

I have not kept up with the blog, and the reason is a good one.  My hands and my heart have been too full!  Between caring for Violet, nursing, pumping, working, cleaning, sorting, organizing, vacationing, shuttling, shopping, preparing, advocating, and generally managing our household, I just haven’t made it a priority to sit down, clear my head, and take the time to do this.  But I really do want to have some record of Violet’s life and milestones, so that someday she can look back and know that she was celebrated too!

So where do I start?

I talked about the joys and stresses of my pregnancy with Violet, but I never really elaborated on the aftermath and what it was like in those first days and months after Violet was born.

We had a rough start, to put it lightly.

I had a horrible, horrible allergic reaction following my c-section that lasted for nearly 2 weeks and nearly caused me to lost my mind.  It started the day after Violet's birth, at the sight of my incision where steri-strips had been used to tape me up.  In hindsight, I remember a minor reaction to this tape, as well as tape used on the girls’ faces in the NICU causing a rash on my chest when I would hold them.  That was a long time ago and nothing that would have prepared me for this.  Pardon the graphics, but I feel the need to stress how awful this was.  Everywhere the tape touched me turned into severe burn-like blisters that oozed, crusted over, and scabbed.  Within 2-3 days a bright red, rough, blistery rash started spreading over my entire torso, into my armpits, behind my ears, down both thighs, and into my nether regions.  This rash itched like you cannot imagine itching.  It was relentless.  Words cannot describe how miserable I was.

At the same time I was dealing with this, I was trying to learn to breastfeed Violet and it wasn’t happening easily.  She was quickly losing weight (got down to 5 lbs ½ oz) because she was resistant to latching on, and when she would latch on she was not sucking productively and was not getting any milk.  She would suck and suck and suck, but never swallow, then would fall asleep.  As soon as I would take her off the breast, she would start crying again.  She seemed so hungry, but wasn’t able to get my milk from the breast.  I was heartbroken because I wanted this so badly, and I didn’t want it to be hard.  I also did not want to pump.  I pumped for Holland and Eden for 9 months and had a lot of negative emotion attached to the pump.  I started pumping in the hospital with Violet and it brought back a huge flood of that emotion.  Then, once home when I had to start supplementing Violet’s feedings to get her weight back up, those emotions really welled to the surface.  We began the endless cycle of trying to nurse, pump, give her a bottle, wash all of the parts, then repeat, while my poor nipples became so sore and cracked, and breastfeeding so painful.  We also began the seemingly endless doctor’s appointments for weight checks, and trying to figure out what was happening with my rash.


I did one course of oral steroids trying to get rid of the rash, but the low dose didn’t even touch it.  I tried countless topical treatments, nothing helped.  I was very hesitant to taking a higher dose of steroids and/or any antihistamines because I was trying so hard to establish my milk supply and breastfeed that I didn’t want to do anything that might jeopardize that.  About 12 days in, I went to a dermatologist and got a prescription for the higher dose of steroids, but decided to contact the pediatrician to double check the safety. By the time she called me back the next day I felt like I was finally less itchy and the rash had stopped spreading. The day after that there was even more improvement.  Eventually it all cleared up except for a small rash along one side of my scar that still continues to bother me to this day.  I plan to look into it further once I am completely done breastfeeding.

Violet did eventually learn to breastfeed.  It took a good 4 weeks before I was able to stop pumping and supplementing with a bottle, but once she got the hang of it she never looked back.  In fact, she wanted to do it constantly.  When she wasn’t nursing she was crying.  I lost count of the number of times I googled “my baby wants to nurse constantly.”  I bought a ring sling, and that saved my life in those first few months.  She would sleep on my chest in the sling.  My nipples could have a break and I could get a few things done around the house…win-win.  I was lucky, lucky to be able to stay home with her for the first 5 months, and lucky for everyone involved (namely Nana), she outgrew the “Cryolet” phase right around the time I went back to work part-time. Whew.  We survived.



At the time I worked really hard to hold it all together; but admittedly, those first few weeks ended up being very, very different than I had imagined.  I could have managed the rash alone.  I could have managed the difficult start to breastfeeding.  I could easily have managed the lack of sleep.  It was the combination of all of those things that had me close to the edge.

Looking back now I realize…I DID manage it!  And I have managed MUCH worse. Sure, we had times when John and I were alone at night with the baby and I just sobbed my heart out because I was SO ITCHY and the baby WOULDN’T EAT and things were SO HARD.  But, I had a healthy baby and we were going through all of this at HOME with our family together.  So really, was it all that bad??

Thursday, October 31, 2013

Happy Halloween!

From our family of Witches, Wizards...and a Little Ladybug!


Hermione and Cho

Monday, October 14, 2013

Tuesday, September 03, 2013

First Day of Third Grade

Another adventure begins!