Precious Moments

Dear ones,

We have had a wonderfully, full November so far and while we are approaching Thanksgiving this year with mixed feelings, it is hard not to be thankful when we've had so many good moments. Here are a few from October and November.

Happy Halloween from the Man in the Yellow Hat, Curious George, and a tree!

A red, hot, chili pepper complete with Sriracha onesie from Aunt Quyen. So spicy.

zzzzzzzzzz

Elle got her flu shot last week. She spent 30 seconds crying and then did this...

Elle's (and our) first William & Mary football game. Go Tribe!

Visiting Virginia Beach (Elle doesn't like the wind!)

 

She's working on holding the bottle by herself (not pictured - my hand)

This goofball LOVES these teething rings!

 
We've had lots of visitors and are in the middle of hosting family so that's all for now. This beautiful baby sure does make us smile!

Love,

Anya

 

11 months old

Dear ones,

11 things about our 11 month old!

So big!

1. Elle is rolling over on her own now. It's a HUGE accomplishment and a funny thing to watch. When she's on her stomach, she will pull her knees under her then push her butt up into the air and gently tip over onto her side. With one sweeping motion of her free arm, she'll roll onto her back. Elle, in all her preemie glory, refuses to use her dainty arms instead her very powerful little legs (kinda like a T-Rex?), but we still give her a lot of credit for her resourcefulness.

2. The highlight of our NICU day, aside from getting to hold her, was the 9:00pm hands-on time because Elle would get weighed and we could officially celebrate the progress of gaining another few grams or even *gasp* a whole ounce! We missed our regular weigh-ins so we gave in and bought a baby scale at a children's consignment store in town. It may not quite correlate with what we're getting at the doctor's office, but we're still happy to see her numbers go up. According to our scale, she is 11lbs, 1oz!

Wait...how much?!?!

3. This leads me to my next fun fact. Every time we go out in public (but especially the grocery store and especially when I'm wearing Elle in the sling), some very kind and well-meaning person, usually a grandma-type, says something along the lines of, "Oh, she's SO tiny!" or "My goodness, that's a BRAND new one!" We always smile and say the same thing. "Well, she was born really early but she's doing really well now!" and leave it at that.

4. Because she was so tiny and had a breathing down her throat for the first few months of her life, it was a long time before we heard her cry. Have no fear, dear friends, she has DEFINITELY found her voice. It tends to present itself especially when Elle wants to stay up and it's time for bed or if I decide to be really mean and take a shower when she wants to hang out. By any measure though, Elle is a really, really good baby and we don't hear her cry very often.

5. When Elle was on oxygen and then on the monitor overnight, she was sleeping in our room in a bassinet. We graduated from oxygen and the monitor in September (hooray!) and a few weeks ago, we were all finally ready to move her to her 'big girl' crib in her own room. Our wiggle worm has gotten to the point where she really wants a lot of space to roam.

Sleeping Beauty

6. Elle's hair is morphing from predominantly a mo-hawk (it's unintentional - it's just the way her hair goes sometimes) to a very awkward comb-over. The hair on the sides of her head still hasn't quite caught up to the top center, which - to be fair - had quite a head start when we were in the hospital. It doesn't seem to matter which side we try to brush it to. Like her mo-hawk, it just does it's own thing.

7. To continue with Elle's current look, let's move on to her clothes. Elle's mostly wearing 3 month clothes...sort of. We're still trying a funny combination of 3 month onesies and newborn/3 month/6month pants. She's long and skinny and most things are either too short or too wide! This winter I think she'll spend a lot of time in tights and leggings.

8. One of her new favorite things is to roll on her back and pull on her toes then stretch out legs. She will giggle and roll from side to side. Happy Baby pose, folks. It's real!

A natural yogi

9. Our friends, Tashia and Matt, were so kind and got us a jumperoo for our very active, "it's always leg day" baby and she LOVES it. (For anyone who's living room isn't dominated by baby items, it's essentially a raised seat where she can stand and sit with a tray of animal toys and other things to entertain her.) We call it her "play station" and when we put her in it after she's been busy doing other things, she gets so excited and starts talking to all of her animal friends. It will keep her attention for a long time and when she gets tired of being in it, she just starts sighing as loudly as she can.

10. Every Tuesday and Thursday morning, Aaron and Elle have a daddy-daughter date. I head to the gym and they head to Panera Bread for coffee and philosophy. There are quite a few regulars at Panera, mostly older folks, and they always think that Aaron is a stay-at-home dad. It's so sweet - if he happens to go there to work without her, they ask where she is. Aaron doesn't always get a lot of work on those mornings, but I know they both look forward to that time together!

11. If Elle is ever a little cranky, the guaranteed way to get a smile out of her is doing an airplane. She loves to be high up with our arms fully stretched out and she will giggle and laugh when we pull her down for kisses and nuzzling her cheeks. it's the absolute best thing in the world to see her smile.

See? Priceless.

And there you have it. Our 11 month old baby girl!

Love,
Anya

Eek! An EEG!

Dear ones,

Over and over again, I put 'blog' on my daily to-do list and over and over again, it got pushed aside for things like laundry, grocery shopping, and dishes. I am learning slowly that my capacity to get things done really revolves around nap time and when Aaron's home. Moms and dads out there, that's normal, right?!?

We're been very busy this month with doctors' appointments, physical therapy, and new feeding regiments. But first, her EEG.

At our 9 month wellness check, we asked our pediatrician about Keppra, which is the medication Elle's been taking since she was in the NICU last spring for her (possible) seizures. To refresh your memory, when Elle was in the hospital, she would periodically have these troubling episodes where her oxygen level would plummet very abruptly and she would get very ashy. The doctors in Kansas told us that these were either seizures or evidence of premature brain activity (since her brain was so underdeveloped when she was born). She had several electroencephalograms (EEGs) to check her brain wave patterns and a consultation with a pediatric neurologist from a different hospital but ultimately, the data was inconclusive. Prolonged and untreated seizures can cause brain damage so Elle's care team decided to start her on seizure medication to be on the safe side. We have continued giving her a small dose (less than a milliliter) two times a day since her NICU discharge in March and the idea was that if no seizure activity presented itself, she would wean herself off the medication as she gained weight. I am happy to report that Elle has doubled her weight since March 26 (she was 5lbs, 11oz when we left Kansas City and at her last doctor's appointment she weighed in at 10lbs, 10oz!) so we were curious if we should begin the weaning process. Her pediatrician in Michigan was pleased with her weight gain over the summer but recommended that we hold off on stopping that particular medication until we had a neurologist to monitor Elle during that process, on the off-chance that she truly needed the medication. 

Fast forward to Virginia and our new pediatrician put us in touch with a doctor in Norfolk at the Children's Hospital of the King's Daughters (CHKD) and our first appointment was on September 18. Dr. L-M was immediately friendly and chatty, a lovely woman, and she shared that her daughter was a 30 week preemie. Now I know that there are many excellent doctors out there that are not parents of preemie babies and that they are still highly qualified and very good at their jobs, but I appreciate that she empathizes with where we've been and what we've been through. 

Dr. L-M scheduled an EEG for October 9 and at 6am that morning, I bundled Elle into the car and made the 55 minute drive to the hospital for our 7:30 appointment. The EEG itself took only 30 minutes but the whole process of checking in, filling out paperwork, getting weighed and measured, getting set up, and getting fed and changed stretched it into a two hour affair. (I am getting increasingly efficient at filling out paperwork with all of Elle's information and I was pretty proud of myself that the only thing I had to double-check was her social security number.) 

The two women that worked with us were very kind and gushed all over her because a) she is very cute and 2) she is even cuter when she is sleepy. The technician and I chatted about her history ("23 weeks, huh? *whistle*"), all the while she was wrapping Elle in a velcro burrito and getting all the wires sorted out. 

Elle hasn't noticed that she can't move her arms yet.

Elle was a very good patient at first and just sat up looking around and smiling. We were all surprised how compliant she was, but it was short-lived. Before long, she realized that her arms and legs were pinned and then......the waterworks. My darling, sweet, happy baby suddenly turned into a sobbing, screaming mess. When Elle gets upset, her nose and her eyebrows turn pink and her bottom lip starts quivering and jutting out. Just look at this face! The technician had clearly dealt with this kind of reaction before and kept talking to Elle in soothing tones. She worked very quickly to measure and mark Elle's head (notice the red dashes on her forehead) in order to place each electrode properly but, according to Elle, it wasn't fast enough. Elle kept trying to turn and look at me and I could see her pleading with me between tears. Help me, Mama! HELP ME! 

Oh, this sweet face.

We've been through a lot in her short life and I've watched Elle get poked and prodded, surrounded by wires and tubes and machines and I've certainly seen her upset before and usually I can handle it. But for some reason, after listening to her scream and cry like this, even knowing that she was just mad and not actually in any kind of pain, I teared up. When the technician noticed this, she laughed sweetly and said, "Well, aren't you just a tender heart?" and handed me some tissues. At the time, I really didn't understand why I was crying but in retrospect, I think it's because usually, I can just scoop her up and hold her and comfort her and this time I couldn't!  

As far as EEGs go, it's all about location, location, location.

The plan for her EEG was to get her all hooked up and then put on soothing music and turn down the lights so she would fall asleep. The EEG best tracks her brain activity when she is relaxed so the tech asked if I had brought a toy or a pacifier that would soothe her. Lucky for us, Elle loves her little fingers and as soon as her right hand was freed, she found her fingers and quieted down to a whimper. 

Panic mode.

Crisis averted.

 Her head was wrapped to avoid the temptation to pull off the probes and when I left the room, Elle was already starting to nod off. The tech said they don't generally mind getting babies her size all worked up because it tires them out and then they fall asleep pretty quickly when it's quiet. 

I wandered out of the EEG office and found a seat in the CHKD lobby. Looking up, I noticed  a lot of brightly-colored decorative glass shapes suspended from the ceiling that seemed to glow in the sunlight. It reminded me of one particular hallway at KU Med where Aaron and I would sit when we were taking a break from the NICU and drink coffee or make phone calls. As strange as it sounds, I had this pang of affection for that hallway and I think of how quiet and peaceful it was at times.

Right at the 30 minute mark, the smiling tech brought a dazed Elle out. She said Elle did great throughout the EEG and that she felt that the data was accurate. For the actual results, I would have to contact our doctor but at that point, the traumatic part was over. Elle's hair was a sticky, matted mess from the adhesive they used to keep the probes in place so she was given a hat and a blanket for her "good work". After a diaper change and a bottle, we packed up and headed home. She slept the entire way home.

Whew.

We heard from Dr. L-M last week and she said she looked over the results and felt confident that Elle's brain showed "normal activity levels". It's not often that we get to hear those words when anyone is talking about Elle's medical status so that was an immense relief! 

There are still many areas of concern that we need to work on (because, as far as Elle is concerned, Aaron and I have homework too!), but that is at least one area that we have seen progress - or at least not major setbacks, which for us, is progress! That's as much as I have energy for tonight but there is always more to talk about. Physical therapy, feeding, sleeping, being oxygen-free, visitors, life in Virginia...what would you like to hear about next?

Love,
Anya

9 month wellness check

Dear ones,

Here we go again! After spending 4.5 months in Michigan with doctors in Mt. Pleasant, Grand Rapids, and Royal Oak, we are once again starting fresh with new doctors. When we were first leaving KU Med, the NICU social worker and the discharge coordinator helped us figure out what doctors we needed and who was in network under our insurance. Aaron and I were already nervous about bringing Elle home (especially at the end of cold and flu season) and having made contact with doctors beforehand made the transition from Kansas to Michigan much easier. 
 

We have fun together.

 This time around, rather than starting from scratch, we were fortunate enough to have a personal referral from one of Aaron's colleagues in the philosophy department. Both fortunately and unfortunately, he and his wife also had a difficult story about the early birth of their daughter several years ago and he was very familiar with the extensive medical care needed. On his recommendation, I called the Pediatric Associates of Williamsburg a couple weeks before we left Michigan and set up Elle's 9 month wellness check for the day after our insurance coverage at W&M began. That day was today!

After filling out the big stack of paperwork that naturally comes with Elle's 'new patient' status, we met with our new pediatrician, Dr. L. She was warm, friendly, and we liked her immediately. She started off by asking us when we moved here from Kansas (the first question in the paperwork is 'What hospital/where was your child born?') and that, of course, launched us into our bizarre story. We went through the paperwork together, discussing all major medical challenges Elle has faced in the last 9 months, and while I knew there would come a point where it would be important to mention Mina, it still caught me off guard when I heard myself say her name. I almost felt embarrassed because I started to cry and Dr. L immediately turned and said, "I understand your pain." She told us that she had lost her baby boy at 24 weeks and showed us a tattoo of his tiny footprints on her right foot. She turned a moment of heartbreak into one of understanding and shared grief. It is hard to say you've lost a baby out loud, but it is so helpful to know there are others carrying the same kind of loss.

This sleepy head was a little cranky after her TDAP shot.

We continued on with Elle's appointment and got her weight and length. At her last appointment in Michigan at the end of July, she weighed 9lbs, 2oz and today she is 9lbs, 14oz (keep in mind, she was 5lbs,11oz when we left the hospital)! She also grew from 23-1/4 inch to 24-1/4 inches in the same amount of time! That news alone is enough to lift our spirits after filling out the 9 month milestone checklist with questions like 'Can your child  clap their hands? roll over? sit up by themselves? stand supporting themselves? with no, no, no, no, and no. We know Elle is on her own timeline and that, all things considered, she is doing remarkably well, but it is still gives us a moment's pause to think about where she 'should' be. Thankfully, this team of doctors is very familiar with babies like Elle and Dr. L was incredibly encouraging. Like every good teacher at a parent-teacher conference, she sandwiched her observations - a positive (Elle has great head/neck control!), a concern (I'd like to see her gain more weight), and another positive (She is visually engaged and tracking well!).

Now that we have a PCP (Primary Care Physician) for Elle, the next step is setting up the rest of the team. Dr. L put me in touch with the referral coordinator at the office who will make contact and set up appointments with a neurologist (brain), a pulmonologist (lungs), an ophthalmologist (eyes), and a GI (gastrointestinal) specialist (stomach/intestines). Elle will be taken care of from head to toe, inside and out! Dr. L also put in a call to CDR (Child Development Resources) of Virginia, who do home care visits and work on early intervention. It is likely that we will have to make the drive to Norfolk for at least some of these doctors' appointments, but I welcome the 45 minute drive there versus the 2.5 hour drive we were making every other week in Michigan!

So we are back on track now. There was a nerve-racking two weeks where we were without insurance coverage and Elle got a slight cold in the middle of August, but we are starting a new month with new doctors and new insurance. There will be many more appointments with shots and paperwork and waiting rooms and labs and we can only pray for more great doctors, more great numbers, and more great news. Here we go again!

Love,
Anya

9 months old

Dear ones, 

Today Elle is 9 months old. 9 whole months. I honestly can't believe it. I can't believe how beautiful and how sweet and how precious she is and how blessed we are to be her parents!

In honor of this milestone, I spent time reading through our posts on Caring Bridges. In many ways, it seems like a lifetime ago but looking through the pictures and reading the journal entries brings so much of it back. I teared up seeing how tiny Elle was and reading about the excitement we felt at every little step she made, knowing full well that behind that optimism and hope was exhaustion and fear. It has been a long journey so far and I know Elle's story is not over yet. I recognize how important it is to me and Aaron, and hopefully someday to Elle, to remember these days as much as possible, and that perhaps this blog is one way to do that. 

Many of you that followed our Caring Bridges site had asked if I would continue to post updates about Elle after we left the hospital. I had great intentions to do that but than life happened. We returned to Michigan, we were busy figuring out how to be parents, we were sleep-deprived, we were driving all over Michigan for doctors' appointments several times a week, and then we moved to Virginia. And now it's been 5 months! So many of you were so supportive when we were in the hospital and have been so kind in asking after Elle in the days since we've been home. This blog is also a thank you to you because your love and prayers helped us get here.

Today, I close with the reason I chose to name this blog 'Bright & Beautiful'. When I think of Elle, I don't always think of the tubes and needles and machines and medicines and the hospital first. I think of how we felt on the day we brought her home. I remember the day that we left the hospital we were anxious and nervous and everything that every other parent feels when they take home their babies for the first time. But we had 118 days behind us and armed with encouragement from our doctors and nurses and so much love from our friends and families, we walked out that day with the hope and the faith that she will indeed have many wonderful days ahead of her and that her future would be bright & beautiful. And that is still true.

So happy 9 months, Elle. We love you!

Love,
Anya