...that God has been doing something with Emma I didn't quite recognize.
We have heard for a couple years now that kids in Emma's classes at school and at church just love Emma. They want to help her and play with her, and they pray for her during their nighttime prayers. We have always wondered if Emma is nice to other kids and if she talks to them a lot - we don't hear her have much interaction with them, but we also haven't been with in her classrooms, either.
In the last couple of months, Emma has come out of her shell big time. And she's hilarious. We continue to hear that other children love Emma. We've been hearing it more, actually. And seeing these pictures sent to me from her daily summer camp at our church, I realized something...God is blessing this sweet child of ours with a personality that draws kids to her. Because she can't walk, kids come to her. She asks/tells them to come play with her, and they willingly go. And if she takes off in her wheelchair, they follow.
Four square:
Water day:
I remember a high school soccer game recently when kids were running around Emma, and she was having a blast with them, laughing, even hugging them.
At a 4-year-old friend's birthday party recently, the birthday girl's 7-year-old sister drew Emma a picture that included Emma in her wheelchair, with a note across the top that said, "I love you, Emma!" Emma had never ever met this girl before.
At a party this past weekend, Emma invited herself to spend the night with a family she did not know, along with another boy she did not know. I couldn't believe it. Obviously, she didn't spend the night with them, but who is this child, and what did she do with my shy daughter? She actually approaches other kids now and asks them their names. At this same party, she didn't. watch. tv. (her favorite pastime). Instead, she engaged the other kids who weren't that interested in tv, either. It was miraculous and so heart-warming.
So God is teaching our child to be patient, kind, outgoing, fun, and funny so that other kids are drawn to her and want to play with her. Since Emma can't necessarily do all the things that other kids do and go to where they are, He's making sure that other kids want to come to where she is.
There is no better feeling than seeing God love your child.
A while back (no idea how long "a while" is), I posted that I have a fear of that moment when Emma realizes that she is different...and doesn't like that she is different. It happened tonight.
Emma has central sleep apnea, so she sleeps with a bipap mask. Today she saw her sleep specialist to hear about the results of her most recent sleep study. Side note: no major changes. The doctor did give us a new mask to try on Emma because the one she has puts more pressure on her forehead, and he doesn't like that it could slowly change the shape of her forehead bone(s?). Because, you know, we don't have enough to worry about.
Anyway, Russell tried the new mask on Emma way before bedtime, just to see how it would do, and she was sooooo upset about it. She hates the mask anyway (and why wouldn't she?), so putting on a new one when she wasn't going to bed wasn't her idea of a good time. And then she said several...I mean SEVERAL...times that she wanted to be plain.
I wanna be plain Emma. I just wanna be plain. I just wanna be plain Emma. I wanna be plain.
Over and over and over, through cries and sobs.
After very gentle questioning, I got her to tell me that she wanted to sleep plain. No mask. Just plain. She wants to be plain Emma.
What is plain Emma? No bipap mask, no "shield" (scoliosis brace), no nightly bowel program, no diaper changes for a 4-year-old, no AFO's, no twister cables, no eye patch, no glasses, no Miralax, no weight management, no crawling, no wheelchair, no stander, no physical therapy, no occupational therapy, no inability to swim, run, walk, or stand alone, no choking on her own spit, no daily vitamins, no sensitive gag reflex, no daily antibiotic, no daily fish oil, no relying on anyone to get in and out of the car, no fear of falling, no avoidance of stairs or curbs, no shunt, no surgeries, no MRI's, no neurosurgeon, no sleep specialist, no orthopedists, no urologist, no therapists, no nurses, no sleep studies, no scoliosis.
Of all these things listed above, Emma has only become aware of how different she is in one aspect: the mask. The rest of it will come.
Can I be honest? I want her to be plain Emma, too. Emma is extraordinary in spiritual and emotional ways, and she always will be. But my heart aches for the times now and in the future when all she ever wants is to be plain. If you're reading this, take a moment sometime today to thank God for making you plain. And if you're not plain, thank Him for the people who are, who take care of you. You see, we give God the glory whether we are plain or not: we should either be thankful that we can help the ones we love with our own abilities....or thankful that there are those will help us when we're not plain ourselves.
So Reese is almost 3 months old, and I'm just now posting about her being 2 months old. It happens. I DID get the 2-month picture, just haven't blogged about anything. And since I'm so far behind on the 2-month update, you can probably guess that I'm not organized enough to know exactly what stats I'm supposed to be listing here. So I'll just go with some basics:
Easing her way out of newborn clothes, but not really full-blown 3-month clothes
Long and lean: at 10 1/2 weeks, she was 11 lb 2 oz (30-something percentile) and 23 inches long (80-something percentile)
Still sleeping through the night (like, 10 hours), with or without a dream feed at 10ish, but we still give her the dream feed anyway...why take a chance?
Graduated from newborn diapers to size 1's at about 9 weeks old because her hiney and waist are so narrow
Started daycare this week and has had an excellent week!
Is getting more into a swaddle-binky-mobile pattern to fall asleep in her crib and doesn't need us to rock her. Bedtime gets a little easier every night!
Gets nosier every day - wants to be walked around, facing out so she can see what we see.
Tolerates a wet diaper for about 1 second, and she makes sure you fully understand her discomfort
Smiles a lot more at us and, recently, her crib mobile
Finally growing some hair on the top of her head, and she loves to have her head rubbed
A few weeks ago, Emma had a post-op MRI to compare to the one she had before all her big surgeries in January. We got the results from Dr. Troup this week. He feels that everything looks improved, and he was overall very pleased. Emma will go back for another MRI in 6 months, which will be 10 months after the surgery.
One disappointing thing about this visit is that, much to Dr. Troup's surprise, Emma's choking has been getting worse. Well, Russell thinks it's the same, but my mom and I think it's worse. And we're the ones with her all day, so we must be right...right? :) The severity of her episodes isn't worse, but the frequency definitely is. So disappointing. But who knows, maybe she has a little allergy drainage or something irritating her this time of year?
Emma also had another sleep study, and the results from it were positive as well. Her central apnea has improved, but it's still in the severe range. Not the best news, but I feel like we're due for at least a little good news with Emma's health.
Ok, enough about the medical stuff - pictures? Yes?
When Reese began rolling over at 4 weeks old (yep, 4 weeks) she really enjoyed it most in her crib. Well Emma decided that she and Reese both should roll over in the crib together. At the end of the video, Reese doesn't seem thrilled about this idea, so Emma tries to make her feel a little better.
And here's Reese rolling over REALLY early:
My mom, Emma, and Reese in their (coincidental) yellow attire - time for spring!
I described in my last post how things are going for Emma with a new baby sister. And I'll leave it at that - time for a post dedicated to Emma.
She is thoroughly enjoying her new school. Finally. They sing all the time, and Emma comes home singing and doing all the motions. She will burst into spontaneous song and dance in the car, too - precious. She has learned how to write her name and really enjoys practicing her writing.
As for her surgery recovery, we still have not seen any improvements in her symptoms. A couple interesting things happened this morning, though. I have had my doubts about the orthopedist she sees at Shriner's - they basically missed her scoliosis at one visit and then had a very strong reaction to how bad it was at the next one. I asked why it had gotten so much worse by the second visit to see if he would be truthful with me...and he was. He basically told me they whiffed on the first one.
Even before that scoliosis debacle, we have been visiting another orthopedist for a second opinion. Boy am I glad we see him. This morning was a routine visit with doc #2, and when I expressed my frustrations about the scoliosis to him again, he decided to take some quick x-rays of Emma himself. Since Emma can't stand up, her x-rays at Shriner's had to be taken sitting with her back against a wall. Russell went back with Emma today, so I'm not sure how they accomplished it, but they got her x-rays today of Emma standing. Think about your own posture - aren't you more slouched and curvy when you sit? Duh. You need to be standing for a spine x-ray. So the orthopedist today told us that her scoliosis isn't as bad as we were led to believe it was. Instead of her spinal curve being 50-something degrees, he estimates it's actually closer to 30-something degrees. Still there, just not as bad. So what does that mean?
There's a surgery being done for kids with scoliosis that helps slowly straighten the spine through periodic adjustments to some implanted "ribs." It's called a VEPTR. Sorry to be rude and blunt, but you can look it up if you want. It's too much for me to go into right now. Anyway, if Emma is a good candidate for this procedure in the future, it won't be as intense or long-lasting if the scoliosis starts out at a milder level.
The other thing we found isn't as great. Emma had follow-up MRI's a couple weeks ago to provide comparative films to those taken in December. Dr. Troup will look at them and tell us what he thinks about the results of the surgeries. We haven't seen him yet, but since all these doctors are in the Greenville Health System, they can pull up anything in a patient's records. The orthopedist this morning pulled up the MRI's and told us what the radiologist's notes said. Cervical MRI (neck) - no change. Thoracic MRI (mid-back) - no change. Here's where I stopped him. No change? Does that mean the syrinx that was drained has already filled back up again? After more careful reading of the notes, the doctor confirmed that that's what the radiologist's notes say. He quickly abandoned the reading of the MRI's with a comment about Dr. Troup being the best at reading them, and we just moved on. Sigh.
If the syrinx fills up on its own, that means that we'll be looking at ANOTHER surgery. This one will involve putting a shunt on her spine to constantly drain the syrinx. I haven't looked into the specifics of this surgery yet, though - no need to worry about it now.
We're back. Reese is napping, and I'm taking a minute to blog. Phew. Time sure has flown by, and I'm behind on everything - blogging, thank-you-note-writing, birth-announcement-addressing, exercising (Ha. Priorities.)
Reese, however, is not behind - at her one-month checkup, she was 8 lbs, 5.5 oz and 21 inches long. She is in the 74th percentile for her height and 20-something percentile for her weight. At 6 weeks, she is STILL wearing newborn diapers and preemie pants, but she is definitely growing. She started sleeping through the night at 5 and a half weeks old...fluke? Maybe...but it's been 8 nights in a row, with the exception of one.
Here are the obligatory one-month shots, including one when Lola got jealous and Reese's facial expression seems to say, "Figures. The dog needs attention, as always."
For certain bottles, Reese is incredibly active afterwards - arms and legs flailing constantly. She loves to be on her back for those little intervals and gets pretty mad when she's held or restrained. If this happens at a restaurant, we put her on her memory foam changing pad on the table and let her go to town. Don't judge. You don't know. Notice the blur in this photo? Because she won't sit still:
And other times, she's completely milk drunk. Comatose, even.
And burping her when she's like this? Forget it. Sometimes it makes feeding her take FOR. EV. ER.
My mom was really great about saving some of the special things from my childhood, and this is one of them - the gown I wore home from the hospital. Reese is almost too long for it, so I'm glad she was able to wear it a few times.
That last picture above was the first smile I've gotten on camera. Reese started smiling around 5 weeks, and she's still not super generous with them, but we get about one a day. I also got her first bath on camera. It wasn't a happy time, but I managed to get a few shots before the real screams started.
Like most babies, Reese has a witching hour. It's later than most babies, around 7:00 or so. Some nights are agonizing for all of us, including Emma.
Speaking of Emma, she isn't crazy about touching Reese. I think she's scared to hold her or touch her. But she does NOT like it when Reese is upset. Emma will talk to Reese when she thinks we're not listening. Things like, "Close your eyes and take a nap. Just take a nap. It's the rules." Yep. It's the rules. I have no idea where that came from. She brings Reese toys - Reese's toys, NOT Emma's toys, and Emma thinks that Reese prefers the purple binkies over the pink ones. Emma has pink binkies for when she wants to sleep in the car...Emma is so particular. Pink is for Emma, purple is for Reese. Reese has her own toys, Emma has her own toys. Sharing might be an issue in our house.
That's a good little summary of where we stand with Reese. Next post - Emma!
Reese and I were discharged from the hospital last Sunday, March 23, and we have pretty much been doing the same thing every day and every night. Throw in some appointments and errands to run, but still basically the same thing every day...and we couldn't be more grateful. We feed Reese on a schedule, and she even wakes up to that schedule at only 10 days old. And at nighttime, she goes right back to sleep. Glorious, I tell you.
So here's what we do:
Sleep, in varying positions, in varying places, but usually in the pack 'n play:
Stare:
Swing:
Snuggle:
This is my dad's football-playing, man-handling hand:
Eat, sometimes loudly (but still turn up your volume):
I love this little girl so much.
Tonight, Emma kissed Reese for the first time. It was awesome, and I thought my heart would explode. The only thing that doesn't make me infinitely happy right now is the fact that I can't pick up Emma yet. She often says, "Mommy, I want to hold you," which in Emma-speak means she wants ME to hold HER. And I can't. But we did take a nap together the other day, and her snuggles and hugs reminded me that she will always want me to hold her, no matter how much I hold Reese.
Day 2 of Reese's tiny life was a much more low-key day for most of us. My pain is getting better, with the help of some good drugs, and I've been trying to walk to reduce some soreness and prevent getting stiff. Reese has been awesome, sleeping and eating so incredibly well. I realize that she doesn't eat much, but still - feeding her takes MAYBE 5 minutes, from the time the bottle goes in her mouth until we're done burping her. Yes, even done burping. Before any of you start in on the just-give-it-2-weeks lectures, I am fully aware of how quickly and drastically newborn behavior can change. All I'm saying is that the least exhausting thing in my life right now is Reese herself.
Reese doesn't cry, she squeaks. I take that back - she cried today when the nurse was squeezing the blood out of her toe for a blood test. She only cried when the nurse had been squeezing her toe for a while - not a peep when she was actually stuck; not a peep when she had another blood test done...nor for her hearing test...nor for her HepB shot.
Reese weighed in 7 ounces lighter than her birth weight and can only lose 3 more ounces before they will change her formula. Are we worried? Nope. She passed her hearing test on her left ear, but the right ear will be tested again tomorrow because she might have some fluid in her ears from being a c-section baby. Worried? Nope. What am I definitely worried about? I just watched her almost roll over, just by kicking her legs in her swaddle and turning her head. I'm telling you, my 2-day-old almost rolled over.
Reese was wonderfully sweet today with moments like this:
Here's what I mean by how quiet and squeaky she is...I just had to video these few moments of squeaks, mouth pops, and tongue clicks, accompanied by swimmy newborn arms. Sorry to bore you, but I'm a newborn mom...this is what we do.
All of this so far is the good...the bad, unfortunately, is Emma. SHE'S not bad, her acceptance of Reese isn't bad; it's her hesitation that we're not happy about. Emma doesn't want anything to do with Reese. Today she told us, in no uncertain terms, that she doesn't like Mommy, Daddy, or Reese. No yelling or crying about it. Just simple statement of fact. Ok, what she thinks is fact. She says things like this not out of hardness of heart but out of her 4-year-old inability to comprehend and explain her emotions. I most certainly DID tell her, in no uncertain terms, that she is NEVER to say that she doesn't like Mommy, Daddy, or Reese. (For the record, she apologized and then 10 minutes later apologized for crying.) She has been pushed to kiss Reese, hold her, hug her, touch her, watch her, wave to her, blow a kiss to her, but it's so very clear that she needs to do this at her own pace. And that's fine. After some attempts at pictures with Reese, I made the executive decision to stop punishing a crying Emma with taking pictures with a tiny human so small and unlike a baby doll - Reese is close to only 6 pounds even, y'all, and you know how newborns look: really, really new in some ways but really, really old in others (wrinkly feet, dry skin) - that's kinda freaky for a 4-year-old who has never had any reason to think that all real babies look like baby dolls. And Lord help if some toy manufacturer ever decides to create baby dolls that actually look like newborns - cradle cap, dry skin, jaundice, hairy shoulders, umbilical cord stump, explosive black/green poop, cone-shaped head, angel kisses, stork bites...Reese has some, but not all, of these. Sorry, folks, but these are all things that we, as decent human beings, overlook to declare a newborn cute. So yeah...no pictures of Emma and Reese yet.
I know that if Emma is forced to love and accept Reese, bad things will happen. I can just see it in her face and her reactions yesterday and today. It will have to start with being in the same room as Reese. Start small. Don't start asking her questions about Reese. Just act like everything is normal. I can see it now - one day (hopefully in the near future), Emma will quietly ask me, "Where's Reese?" I will say, "Napping in her room." And that's it. No pushing the issue for either of us. Soon afterwards, she will say, "Where's Reese?" "Napping in her room." "Can I go see her?" I understand how my child operates, so I really hope that Emma doesn't go through such a drastic jealous child phase that this whole scenario that has played out in my head never comes true and I'm left calling Dr. Phil. Or the SuperNanny.
I sure hope that Emma remains predictable and that Reese becomes predictable. My Type A personality needs this. But the mommy in me will accept and love my babies unconditionally. There may be moments of dislike, but never moments of unlove.
After naming the new baby Reese, I thought it would be interesting to look up the meaning of the name: enthusiastic, eager, ardent, fiery. FIERY. I could have told you that based on how bad I felt during a lot of the pregnancy and based on how active she was.
WAS. She WAS active.
On Wednesday, March 19, 2014, I had a regular old ob visit with Dr. Moore (the man who delivered Emma). At 4:30, he and I both agreed that there was no real need to check if I was dilated, etc. I then proceeded to go to church and arrived at home around 7:45. After a couple of visits to the restroom, things didn't seem quite right, and then around 8:10, I felt quite certain that my water was breaking. NOT IN THE PLANS! No bags packed, nothing. We basically threw an iPad at Emma and waited for my mom to watch her while we hurriedly packed only the basics just to get us through one night.
Russell and I left for the hospital around 9:00. I was still able to have a c-section performed by who else but Dr. Moore. He and I just looked at each other and kinda laughed...5 hours after we both felt that I wasn't even close to labor, and there he was, laughing because it was absolutely unnecessary to question whether I was in labor: my water had been breaking for about 2 hours at that point (see, this is why we can't have nice things - one of my all-time favorite jokes). Russell's parents came to Greenville to watch Emma so that my mom could come to the hospital - sometimes ya gotta have your mom. Mom arrived in time to wait with us in pre-op.
I only had to experience about 10 contractions that were strong enough to feel before I went into the OR. Everything went pretty routinely after that, and we ended up with this darling jewel born at 11:43 pm, weighing 6 lb, 9 oz and measuring 19 inches long:
So fiery Reese came on her own time. Sounds like she fits her name, right? Well that sweet little darling was as quiet as a mouse for about 30 or 45 minutes after she was born. She never cried at all. Then all that activity I felt in my stomach for all those months showed up again in a squirmy, hungry little girl...but again, not a peep of crying, fussing, or complaining - just showing the typical baby signs of hunger.
Once we finally got in our room, Reese got a bath and a bottle, and she guzzled an ounce of formula in really good time. Since then (we're almost at 24 hours), she hasn't been all that interested in eating much, but those first couple of days are kind of hard to force them to eat. In the first 24 hours, she has lost 3 ounces of her 6 lb, 9 oz, and I'm not one bit worried. We have faced so much with Emma that Reese's eating patterns seem so trivial. I may eat those words later (no pun intended), but for now, we are just basking in the joy of this wonderful new treasure in our lives. Reese hasn't cried all day, and she has slept like a champ. She makes these darling little peeping noises, both awake and asleep, and she has a talent for making quite an array of faces - some of them not so cute, actually!
I have been in a lot of pain from the c-section, and the nurses have had a hard time figuring out what's good for me. I'm coming up on only sleeping for 1 hour out of the last 40 hours because the pain was so bad last night that I laid here in the bed, listening to Reese and Russell sleep and wondering if/when my pain would fade enough for me to actually fall asleep. FINALLY, late in the day today, my pain was manageable, and we took a walk to try to exercise out some of my soreness and to get the gas in my body moving around - when they open you up like that, gas gets trapped in your body. Weird, huh? So here she is on our walk, in her hospital-issue bassinet:
And then there's this:
Reese had a total of 18 visitors today, excluding grandparents, along with 6 staff aside from nurses. Our room door revolved all day, but happily so.
Ok, so as for Emma's actual birthday and birthday weekend - what a whirlwind weekend it was!
For starters, a sweet boy's birthday party on a farm, with horseback riding:
Behind the yellow cage, week-old baby goats:
This chicken's hair is for real. And it always looks like this. Now take a second and think about someone you know whose hair this resembles...because we all know someone...
Day-old baby lamb:
The beginning of Emma's horseback ride didn't go so well - she wanted to lean over and lie down on the horse because she could feel that she couldn't balance and felt like she was going to fall off (what a scary feeling that must be, especially that high off the ground). Of course, Daddy was there to hold her and make her feel more secure.
This looks like a real smile, but it's just a camera smile...in the next picture, you can see her smiling with her mouth, but her eyes are saying, "Get me off this bleeping horse."
And later that night, a calm family dinner to celebrate the doodlebug, including some of the best cake I've ever had:
And finally, on Emma's actual birthday, I didn't take any pictures of Emma opening her gifts from us. Again, I was too busy focusing on my darling one to really care about the pictures. But I did snag these at dinner before she ate her favorite food, quesadillas and "chippies." And the complimentary dessert was one of those fried ice creams with so much whipped cream on top that we didn't actually know what was underneath. Emma only wanted the whipped cream, so Russell and I indulged on the ice cream. After inspecting it, I could have sworn that it wasn't fried, but I think I was wrong...which means we accidentally cheated on our Lenten sacrifice of fried food...unless we decide to be those people for whom Sundays don't count, and then we're good.
Russell and I live in Greenville, SC and have been married since December 17, 2005. We have a Pekingnese/Shih Tzu mix named Lola, and our first child, a daughter named Emary, or Emma for short, was born on March 16, 2010. Baby #2 is due in April 2014!
