Thursday, January 31, 2013

Five Years {Remembering}

How can it possibly be five years ago today that our lives were forever changed?  I so distinctly remember sitting in that little ultrasound room.  I remember what I was wearing, I remember the look on the ultrasound tech's face, the look on our dear doctor's face as he took a look and then gently explained that our baby had a condition that was "incompatible with life" ... the way he gently expressed his promise to take good care of me and the baby through the pregnancy and delivery.  Then, I just remember feeling numb.

This is always a hard day, remembering the anniversary of the day we were told that Owen would not survive outside of me.  Five years already ... as I remember and reflect, I cannot help but thank God for his mercies which are new every day and have been so evident in the five years that have passed since Owen's diagnosis.  
The steadfast love of the Lord never ceases; 
his mercies never come to an end; 
they are new every morning ... 
Lamentations 3:22-23

Tuesday, January 29, 2013

Dates with the Kids

Simple math and it's evident that we are outnumbered!  One of the challenges of being outnumbered is finding one-on-one time with each of the kids, time to connect and just focus on each of them individually.  Thus, we try to find time to "date" each of the kids.  Knowing that my full-time return to work was impending (last week), I tried to get in a date with each of the kids in the weeks leading up to my return to work.

Jack's pick was to try the new frozen yogurt place in town.  This was also his "IOU" birthday one-on-one with me since we were in China on his birthday, and birthday tradition is that I take the kids to birthday breakfast before school.  We were going to do birthday breakfast, but with his earlier school start this year getting up even earlier is not something either of us were excited about.  So, he chose an afternoon date.  I would have liked to take a photo, but he likely would have been mortified seeing as this new place seemed to be where lots of teens hang out after school!  I thought I would spare him of being "that mom" ... at least this time (ha!).

Samuel's pick was to go to a movie over Christmas break, just Samuel and I.  I cannot even remember the last time we went to a movie so this was a real treat for Samuel.  Again, no photo.  Jeepers, the boys really seem to be appearing less and less in my little bloggy world here!  I'll need to work on that!

This past weekend, Lydia and I got to go to a baby shower together.  So sweet to get dressed up together and be with a sweet group of other moms and girls.  Once Lydia got past the fact that the baby had not yet made his entrance and was still in Ms. Jennie's belly, she had a fantastic time at her first baby shower (it helped that she was a bit doted on by the other girls there who are Jack's classmates).
And, Nora and I ... well, our "dates" often entail visiting a doctor or middle of the night snuggling!   She is definitely getting her fair share of dates!

Thursday, January 24, 2013

No-no's No More!

Today was a big day for Miss Nora as we ventured down to Children's for her post-op.  The most exciting part of the visit - restrictions are lifted!  No more no-no's and no more taping her lip!
At the start of her appointment, no-no's are still on as is tape!  
And, yes, she's working it ~ giving us her sad eyes and face!
Photos on this post are from my phone so not the best, but you get the idea.  It is truly remarkable what our surgeon did for Nora (yes, I still miss her clefty smile, but I realize that this is what is necessary for her).  All looked well with Nora's healing.  Her palate was very wide before, and our surgeon did "warn" us before surgery that closing it completely in one surgery might not be possible.  After surgery he was fairly optimistic but did tell us that he really had to stretch everything tight.  He noticed today that she does have a very small hole in her palate, but we wait and see what that means over the course of the next year.
And, because I know that some of you like talking about nose leakage, we also wait and see on the nose leakage.  Another example of why I'm lovin' our surgeon, he is relaxed about all of this, but he understands the emotional side of it as well giving an example of how we will not have her going to Kindergarten with a leaky nose.  Yes, this is true!

We do have "homework" where we need to massage her scar a few times a day.  You may notice that her lip is pulled up slightly, her scar may temporarily pull it up more in the next few months.  We may also see her scar get more red.  It sounds like her scar will likely change in the next year, perhaps getting worse and then getting better.  Looking at it now though is quite amazing.
 One of her tricks - scrunching her nose on demand
Thank you to everyone who has been encouraging us and praying for us during this time of recovery!  Love you all!

Thursday, January 17, 2013

Nora's 18-Month Stats

Little Miss had her 18-month wellness exam today (she was 18-months last week, on the 8th).  I know I've mentioned it before, but I just love and trust our pediatrician so much, and I love how well she knows our family and our children (all five of them).  Today not only did she give Nora her exam, but she also gave Jason and I a boost of confidence in how well Nora is adjusting.  This isn't always easy for us to see but to get an outsider's perspective is quite encouraging as our pediatrician was one of the first to meet Nora when we returned to the states nearly three months ago.
A few minutes of freedom from the no-no's
Now, onto Miss Nora.  Developmentally Nora "tests" at about 10-months with emerging 12-month skills.  BUT, she is growing developmentally by leaps and bounds every day.  Because of this, at this time, she isn't being recommended for occupational or physical therapy.  We will, however, keep working with an early childhood instructor in our community to set goals and continue to "encourage" Nora to grow.

On the speech side, Nora "tests" at about 6-months.  This will be one of our most challenging areas.  We have a lovely speech therapist who will be coming to our house to work with Nora (and us) a couple of times a month.  Not only will she help with speech, but she will help with eating as well as Nora continues to learn to use her new, rearranged lip and her palate.
Hey Girl, what's so funny?
Now, onto one of my favorite things - her stats!  Nora is 18 pounds, 6 ounces (not on the charts yet, but we expect that will change as she continues to recover).  And, she is 30 inches long (just barely on the charts - 8th percentile).  
Um, yes, we are watching you!
Four immunizations today as our pediatrician is getting her caught up, poor baby.
She is a mischievous little beauty, and we love her so!

Sunday, January 13, 2013

Sportin' a 'Stache and Some Perspective

One week and two days post surgery, and Nora continues to be a trooper.  This past Wednesday she had her lip sutures removed and now has steri-strips on her lip.  Between the "no-no's" and steri-strips, she is a site!  Both of which are part of life until at least the 24th when she goes back to the surgeon for her post-op.  The steri-strips are supposed to stay on for 1-2 days before needing to be replaced.  I think the 2 days was a bit of an exaggeration as replacing them every day doesn't always seem enough!  Replacing steri-strips on an 18-month old is not fun (but, each time we do it, I think of our friends whose daughter has Epidermolysis Bullosa and the dressing changes they have done, I am in awe, my friends, this is nothing compared to what you have done for your daughter!).

Here is Little Miss sporting her steri-strips ... like a little mustache.  This is the cleanest they ever are, right after they are put on!  Needless to say, her "new" nostril is a bit of a leaking machine!
Sleep continues to be a scarce commodity, but we are functioning!  And, our perspective is changing as each day goes by.  I will always miss Nora's clefty smile (or her diva smile as a friend so appropriately described it); however, as the days go by and as Nora is feeling more and more like herself we are seeing her somewhat mischievous and strong-willed personality coming back.  Love it!  And, her face is lighting up when she does smile and giggle.  She has a dimple high on her right cheek that we adore, and it's back!  (Not captured on these photos yet).
A dear friend sent me a note, gently reminding me of the love that will grow for Nora's "new" smile, even as we miss her old smile.  A reminder that this "new" little face is the one we'll take to kindergarten, the one who will get her driver's license, the one who will graduate from high school, the one that Jason will walk down the aisle one day.  As my friend said, "so many good things to look forward to with Nora's fancy, dancy new smile."  Love you, friend!  Thank you for that perspective!

Tuesday, January 8, 2013

She Continues to Amaze

Nora is doing remarkably well, it is so evident that she is a fighter.  While not completely back to herself (still swollen a bit and obviously still uncomfortable), we are starting to see glimpses of our Nora.  And, we have started to get some lopsided smiles.
We are still, however, mourning the loss of Nora's BIG clefty smile that so beautifully represented her big personality.  I know that I've eluded to this before, but I never would have predicted how my heart would ache missing Nora's cleft.  This may be hard for others to understand, but we miss her as we fell in love with her, as she was created. 

Bittersweet, a word that I perhaps overused to describe so many aspects of our journey with Owen.  And, here it is, surfacing again.  All of the above said, we are so aware of how this surgery and the incredible work of the surgeon is a life changing gift that will change Nora's future, evoking fewer stares, whispers and the like.  I look at Nora's "new" seamless top lip and cannot help but be in awe. 
And, it really goes without saying that her "new" little button nose is quite adorable and quite similar to that of her brothers and sister.  Another bonus, the extra cuddling and comfort she has been wanting from Jason and I has been the best. We are still figuring out some things (namely in the feeding and sleep areas). And, admittedly, I am grateful for coffee these days (with maybe too much creamer).
Tomorrow morning we head back to Milwaukee for Nora's suture removal on her lip (removed shortly following surgery to minimize scarring).  All of the other sutures, inside her lip and mouth, are dissolvable.  Praying that this will be Nora's last time under anesthesia for a while!

Saturday, January 5, 2013

Our Little Warrior

Without further ado, here is Miss Nora, our little warrior, post-lip and palate repair.  Angie describes her little one as a warrior, a totally appropriate description for these little ones. 

I hesitated to post a photo because it's really hard for this mama to look at the eyes of her daughter and not see the sparkle that is normally there.  Through this though I am in further awe of this little one that we get the gift of calling daughter, she is a fighter.  And because of her fighting spirit, we were able to come home this afternoon.

So, what will the next couple of weeks bring?  Well, in addition to ensuring that Nora's pain is managed and that she is well-loved on (so thankful that she is attached to us and finding comfort in us which is improving my one-handed typing skills), Nora will have to wear the arm restraints ("no-no's") for the next three weeks or so (for sure until her post-op later this month).  In addition to not being able to suck her beloved thumb (which is already a source of frustration for her), she cannot drink from a bottle so as to not compromise her palate repair (of course, we went cold turkey with the no bottle thing as I did not want to give up any of those precious times with her before surgery).  Nora is allowed to drink from a cup (failed attempt on that tonight) or we can syringe feed her which definitely seems to be the way to go right now.  Nora's lip sutures will be removed next week, the rest of the sutures (in her mouth) are dissolvable, and while I haven't gotten a real good look inside her mouth, it does look a bit like a sewing machine went to work in there (thank you for the heads up on that, Angie).  We will also have to see the ENT for a follow-up as Nora also had ear vents put in (fluid in the ears is quite common in cleft kiddos).  I was only half joking when I asked if they could just go ahead and pierce her ears right away. 

So thankful that this major surgery is behind us and thankful for the surgical team Nora had.  The surgeon we were referred to is wonderful.  And, I must note that one of the Residents assisting him was a young Chinese-American doctor.  Warmed my heart as it was obvious he was smitten with Nora and made extra efforts to see her last night and this morning.   

Thank you for encouraging us and praying for our sweet girl.  We will surely have to take recovery and everything that comes with it one day at a time.  And, we are absolutely looking forward to seeing Nora smile again, rearranged lips and all.

Friday, January 4, 2013

Just Chillin'

In Surgery

We handed Little Miss through the OR doors at approximately 8:15 this morning.  Now, we are just "patiently" waiting.

Some pre-op cuteness (Nora, not us, haha) and a little last minute thumb sucking.

Thursday, January 3, 2013

Her Smile ...

Is infectious ...

It melts Us ...

It will change forever ...

At 8 am central time tomorrow (Friday), our Little Miss will be in surgery having both her lip and palate repair.  While we know the One who goes before us, my head and heart are in turmoil as I anticipate what tomorrow will bring.

Thank you for your prayers and encouragement and for loving on us!