The Widening Gap

Oh, Lu Lu Belle...how you make me laugh...


...and how you terrify me with your craziness.

Lucy is on a developmental rampage.

She is crawling. Everywhere. It's still more of an army crawl, but she is FAST. And busy.


It's been interesting to see the relationship between her and Henry...since she's getting into his toys, messing up his perfectly lined up race cars, and otherwise giving him a run for his money. (For the record, "mine" is a bad word in our house. "Henry...you don't say MINE...it is the FAMILY'S toy...")

Lucy can also add her first...and I think her second...word to her list of achievements..."mama", I am happy to report, was her first. So far it's cute, but I'll let you know when it's not. I'm sure it won't be long. And, she's used "dada" a few times...specifically to her daddy. :)

If you hold her hands while she is standing...she tries to WALK. As in, she begins taking deliberate steps towards whatever item she has her sights on. She can't balance to save her life, but the fact that she knows how to move her chubby legs in a forward motion baffles me.

Oh, and she can sit unassisted too.

...and one of bottom teeth is poking through. Let the record show that this last development sends chills down my spine like no horror movie ever could. I see yelping and tears in my future.

In case you forgot, the girl is 7 months old. Seven.

***

The thing about Lucy's rapid development is that it widens the gap between her and Jill.

Sure, I could tell that Jill was behind before...but the average person couldn't, and I was her mom and hyper-aware of every movement.

Beforehand, babies...even those on track...don't do much. They just kinda lay there for the most part.

Now though...as Lucy scoots around like a maniac...my heart sinks as I see Jill still laying there quietly on a blanket. Barely even able to coordinate her movement enough to grab a rattle sitting next to her.


Don't get me wrong...Jill is progressing. Every. single. week. we see improvement. She is getting stronger and can do things a little better every week.

THIS IS GOOD.

But while Jill is moving forward...she is so. far. behind. It's *really* obvious now.

It's not just that she can't sit up yet...it's that she is nowhere NEAR ready to sit up yet.

Asking the therapist: "Do you think Jill will be able to sit up unassisted by her first birthday?"

"Um...let's make that our goal okay?!"

Not the answer I wanted.

VERY strange to think that my daughter may not be able to sit up at her first birthday party.

Particularly when her twin is likely to be running around like a banshee.

The conundrum for a mom is this:

As Lucy hits milestones, I find my reaction to be one of a sinking pit in my stomach...not the joyous celebration, hooping and hollering I did when Henry did these things.


Rather than being ecstatic for Lucy, I grieve for Jill.

And that's grossly unfair...to both of them.

I know that Lu is on the high end of the spectrum, Jill on the low. Put together, it's a big difference.

I just have to remember to celebrate each of the girls' development separately. Make it a conscious decision to not compare. (Easier said than done, no?)

Hoop and holler for each girl individually...and not as a unit.

Love my children for who they are.

Henry as Henry.



Lucy as Lucy.


Jill as Jill.

(Don't you just love Jill's bedhead?!)

Different but precious.

Made in His image.

Loved like no other.

Jill-Jill

I really don't have much to say today.

But, I will update you on Miss Jill.

I took her in for a weight check yesterday morning.

She gained 14 ounces in 21 days!!!

WOOP WOOP!

(this is in comparison to not gaining a SINGLE ounce in over two *months*)

I'm still nursing her like usual, and then feeding her a bottle of formula.

So, after all of that, she is now all of 11 pounds, 5 ounces. :)

Happy Tuesday everyone!

National Geographic: Suburbia Edition

It is imperative that the following blog post be read as if a man with a slight British accent is whispering the narrative.

In her natural habitat, the mother wears no make up and her hair is traditionally worn in a ponytail. The t-shirt, if clean, is considered a perfectly acceptable fashion choice, and if a shower was obtained, her day is officially a success.

The mother of the clan is adept at multi-tasking. In this scene, she is seen feeding her young where her adaptability allows for an unprecendented variety of feeding techniques. Not only is she able to nurse one baby, while bottle feeding a second baby...she is able to give a third child the look of death for playing with her camera.

So, you know how you (ideally) look in the mirror at least once a day...but it isn't until you see a picture of yourself that you *gasp* aloud? Yeah. That weird tuft of hair...those USED to be bangs.

WOMAN GET THEE TO A SALON!
...fantastic sams, super cuts, even the neighborhood barber shop...
ANYTHING!

Gee whiz. It's any wonder my husband hasn't left me yet.

(oh, and you can stop reading with a British accent now...)

So, apparently I've been totally starving my poor child. Jilly has been nursing the usual 10-15 minutes...and THEN *pounding* 6 ounces of formula.

oops.

A bit of research on my part found that many kids with CP (and remember, we still don't have an official diagnosis), have feeding issues because they get tired sucking and/or chewing. It appears that this may be the case with Jill.

It will be interesting to see how much (if any) weight she gains.

By the way, bottle feeding sucks. There's dishes and mixing and buying and packing and pouring...man, it is so much easier to just whip out a boob.

Yes, I just said boob. It's okay.

But, Henry likes to help. And as you can see, Jill adores her brother so it works out for everyone.

Thank you for everyone's kind words in the last post. :)

And don't forget, today is the last day to enter the giveaway!!!

Perfection

Every baby who has done any time in the NICU, is scheduled for a follow up "Infant Development Clinic"...

Jill's was on Friday morning.

Today was the first day I haven't cried since.

One of her NICU doctors says:

"She's probably going to be diagnosed with Cerebral Palsy...[looks over at the therapist who shakes her head in agreement]...and we need to get you connected with an orthopedic surgeon because it is very likely she will need surgery in the future."

So non-chalant.

He may as well have said

"Oh, and your library books are due back on Tuesday."

I, on the other hand, felt like I had been hit by a ton of bricks.

That I hadn't even seen coming.

Really...I felt like I had the wind knocked out of me.

He seemed so sure of it all.

Yup, she has it.

And surgery????

In all my mind's wildest dreams of what Jill's life might look like, surgery *never* entered the picture.

Wheelchairs, braces, crutches, learning disabilities...all kinds of things had run through my head.

But never surgery.

Wait, I've done surgery with a baby.

It was no fun.

I thought I could cross that off my Bucket List.

When the therapist placed her hand on my knee and looked at me with tenderness and said "I know it's hard news to hear...you can call me anytime"

I wanted to slap her.

Do not touch me. I do not know you. You are not my friend. You do not know what it feels like. I know you are just trying to be nice, but honestly I'm about to go postal on you.

As we walked out through the lobby, we passed a very pregnant girl.

"I bet her baby is perfect."

Dripping with bitterness.

But wait...


Jill IS perfect.

I do not believe that God makes mistakes.

Jill is *exactly* who God intended her to be.

I do not want Jill to ever, Ever, EVER believe that she is imperfect.

Or that she is flawed.

Damaged.

Defective.

She is His creation.

I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.
-Psalm 139:14

She may need extra help. She may not be a triathelete. She may need extra snuggles and kisses and hugs.

But she is not wrong or broken or incomplete.

Jillian Mary is who God lovingly made her to be.

My next thought went to her brother and sister. The way that their lives will change.

And then I smiled...

...because yes, Henry and Lucy will be changed.


They will be more compassionate, more loving, more tender hearted.


Well, Lu might need a little help in the tender department...the girl has quite the mean streak. :)

So excuse me if I burst out into tears the next time you see me.

I'm a little fragile right now.

Not gonna lie.

My heart is much too wrapped up in my children.

Have I mentioned how hard it is to be a mom?

But oh, how I wouldn't trade it for all the riches in the world.

More (not so good) Jilly News

We had our 6 month check up for the girls yesterday.

Lucy has gained almost 3 pounds in 2 months and weighs 14 lb. 11 oz.

Jill, on the other hand, didn't gain a single ounce.

Not one.

She weighs exactly the same 2 months later at 10 lb. 7 oz.

My six month old baby only weighs 10 pounds.

She grew 2 inches...but didn't gain any weight.

Our first experiment is to supplement with formula after every feeding...it obviously isn't a milk supply issue (since I have LuLu's rolls to attest for that!)...but it *might* be that Jill gets tired and quits nursing too early...

Since it's easier to suck from a bottle than it is from mama, I have to see if she will take formula after a regular nursing session.

We go back in 21 days for a weight check to see if that was the issue.

In the meantime, we are being referred back to the neurologist...when I asked why, this was the response:

"Lots of babies don't get referred to the neurologist because they look so bad that you can tell from just looking at them that they will have long term issues...and then some babies are doing so well that you can tell from just looking at them that they won't have issues...but Jill is in this gray area...she's made remarkable progress since she was first born...but she's still struggling, so the neurologist might be able to see some predictor indicators for Cerebral Palsy...and at least give us an idea of what we might be dealing with in the future..."

There were those words again.

I focused my attention on a door hinge.

It's all that kept me from bursting out into a hot mess of tears.

This morning was our first bottle feeding.

She didn't drink any of the formula...but then again, she had no idea how to suck from the bottle nipple...and when she did manage to get some formula out accidentally...her eyes watered and she pretty much gagged...apparently formula isn't so yummy...

So we will keep trying. I hope she gains some weight.

I just wish I knew what it was like to go to a standard well-baby check up and not hear the words cardiologist or neurologist...

It makes me tired.

Jumped the Gun...

Remember this post when I said that Jill scored at 75%?

Well, apparently I was wrong...

...or wishful thinking...

...or that was my sub-conscious hoping that if I typed it that way, it would come true?...

I don't know.

Psychologist I am not.

See, what happened was that I had glanced at the checklist...while trying to keep Henry and Lucy entertained...and I thought I saw most of the boxes checked...but what I didn't realize was that there were multiple pages of checklists...excuses, whatever...

As a reminder, Jill is 6 months old.

The promising sign is that she has caught up with the 0-2 month skills...which she didn't score very well on at the time either.

Perceptual/Fine Motor (small movements - hands): 4/4 skills at 0-2 months and 3/8 skills at 3-5 months.

Cognitive/Adaptive (problem solving): 4/4 skills at 3-5 months and 1/5 skills at 6-8 months.

Language (gestures or verbal communication): 3/3 skills at 3-5 months.

Gross Motor (large movements - legs/arms): 6/6 skills at 0-2 months, 5/10 skills at 3-5 months, and 2/16 skills at 6-8 months.

Social/Emotional: 5/6 skills at 3-5 months and 1/4 skills at 6-8 months.

I almost didn't post this. I almost just left it as is. Not because I am ashamed, but because I feel stupid. Why did I jump the gun and post what I thought I saw before I had the report??? Why did I assume that a quick glance was sufficient?

Whatever the reason, I don't know. But I do know this:

I am sad.

So sad.

I guess if I'm honest, I thought that Jill's movement issues would be a lot like Henry's heart...scary and stressful...but ultimately...

temporary.

Something that would be a memory.

A story for the baby book.

But nothing long term.

Surely she would grow out of it.

...

We know nothing for sure right now. She can still go on and catch up...it just might take her longer to get there.

We have an appointment with a different Physical Therapist on Friday through the NICU...who will do their own, separate assessment...someone who has never seen her...a second opinion if you will...

So we will see what they have to say.

But if I'm honest...and I watch her movements...really watch how she does things...or doesn't do things...

...I'm not entirely sure that I believe that this will all go away.

At least not completely.

And so, I try to wrap my brain around the idea that I may, indeed, have a special needs child after all.

To what degree I don't know.

But even still it's hard to come to terms with.

I have so much to say about all of this...but I need to process it...make it coherent...and not turn this into the world's longest blog post...

So I'll leave it at that for now.

I don't know about you, but it's a lot for me to take in all at once...but then again, I'm her mommy...

Jilly Update

Now that the girlies are 6 months (!) old, Jill had a big assessment with her physical therapist.

Basically, a checklist of things she should be able to do at this age.

Back when she was first assessed, she only scored 50% for babies 0-3 months.

Now, she scores at 75% for babies 3-5 months.

So, that's pretty good.

Not 100%, but definately better.

Oh, and the places she didn't score on were all physical...not cognitive (mental). So the troubles she is having so far are all with movement.

Another good in my book. :)

Most of Jill's issues with movement are really based on her not being very strong. She can *do* most things, but they are hard for her and she gets wiped out pretty quickly.

A pictoral example:

She can hold her head up when she's on her belly...
But she quickly tires and has to take a break...
Up again...

Another break...
Okay, a little more... But remember: being this beautiful is tough work. :)

She can roll over from her belly to her back...

So that her sister can suck on her fingers...oh, and spread around the germies...

But I'm pretty sure LuLu doesn't care.In the meantime, all three kids are super gunky, nasty, grody sick. Not feverish, just really bad colds.

Me and the booger-sucker-outter are BFF right now.

Rainy Day Reflections

It's sprinkling outside. A bit chilly. Overcast.

House is quiet.

I can't help but get wrapped up in my thoughts this blustery morning.

Jill's therapist just left.

Andy is on his way back from Henry's cardiologist appointment.

It's a strange feeling to know without a shadow of a doubt that I live a blessed life...but still feel sad inside too.

When little girls dream about their grown up lives, their husbands, their homes, their children...they never think they'll be "that" mom.

You know, the mom whose son has a cardiologist and whose daughter has a neurologist.

2 out of 3.

You never think you'll ever need to visit a Children's Hospital.

Or keep appointments with physical therapists.

Or quarterly echocardiograms.

The kids are fine. Don't get me wrong.

Henry's heart looks even better than it did at the last appointment. Jill is meeting all of her milestones. Lucy...well, she's just focusing on outweighing each of her siblings. :)

I really try to not worry about my kids. I honestly don't want to expend a single ounce of energy worrying about things that may never happen...but the fact is, I do.

And I hate it.

I don't want to make mountains out of molehills, but I also don't want to be the ostrich with its head in the sand either. It's a weird balance.

I'm not gonna lie. Every. single. day. I worry for my little Jill.

Some days worse than others.

She is fine and not showing any major issues at this point.

But the reality is that it's all a big, huge, fat, awful waiting game.

We know that she had brain trauma. What we don't know is if there are any lasting effects and/or what their severity may be.

We just have to wait and see how she progresses. Does she crawl? Does she walk? Does she speak?

The answers will all come in time.

But no sooner.

And that's hard.

My conversation with the physical therapist:

"So, do you see any reason to believe that she might not walk?" "No, it's too early." "So, you mean that it's possible that she might not be able to walk?" "Yes it is possible." "Is it possible that she might be perfectly fine?" "Yes." "Do you have a guess either way?" "No, it is too early to tell anything at this point. We just have to wait." "So you have no idea?" "No."

Clearly she's been trained to deal with parents like me. Parents who desparately want an answer sooner than it is feasible.

Now.

I had a bit of a panic attack the other day. Thinking that "ohmygosh, if Jill can't walk, we'll have to move! we can't live in a 2 story! but we can't afford to move! and then we'll have to retrofit the house and widen all the doorways and make an accessible bathroom and get a different car with a lift..."

Silly I know. Worrying about tomorrow's problems that may never come.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
-Matthew 6:34

My brain knows these things. But my mama's heart can't help it.

I guess it's just surreal to not be *guaranteed* that your little girl will one day be tearing around the house like a wild banshee.

She may be perfectly fine, but my reality is that that isn't a given. She may not. I don't know.

Only God does.

And I know that He has great plans for her. And Henry. And LuLu. And our little crazy family.

For now, I just love on my littlest girl and do what I can to keep up.

But I won't lie.

With every twitch and every little grimace, my heart sinks into my stomach and I cringe. Oh how I wish those little glimpses and reminders that everything isn't *quite* normal would just go away. She doesn't do it nearly as much as she once did, but they are still there. They haven't gone away completely.

And it makes me sad.

And while I hate not knowing what life will bring for us, it gives me hope. I have hope that this will all just be a phase we look back on.

Like I told the therpist the other day:

"I really hope this is just a giant waste of your time."

"I do too."

And if not, we'll keep on keeping on. Because regardless, I wouldn't change a thing. I don't understand it all, but I know that there is purpose.

And when I find stories like these, I just think:

"If SHE can do it...surely I can."

So if I'm not worried...

...why do I find myself constantly googling Cerebral Palsy and reading the same information over and over and over again...

...and why do I keep staring at Jill expecting her to blurt out and tell me what is going on?

Being a mom is awesome. But it's heart breaking too sometimes.

Two Month Check Up Stats

Two months.

I know. I know.

I don't know how it happened either.

Crazy.

Lucy: 9/14: 11 lb. 5 oz. 75% (8/10: 8 lb. 15 oz. )

Jill: 9/14: 8 lb. 16 oz. 25% (8/10: 7 lb. 9 oz.)

Lucy: 9/14: 23.5 inches 90% (8/10: 20.5 inches)

Jill: 9/14: 21 inches 10% (8/10: 20 inches)

So, you can see that Lucy is gaining and growing quickly...while Jill is a slow poke in the growth department. The doctor is mildly concerned about Jill. We were supposed to get our first set of vaccines today, but he specifically wanted to wait another month to "give her a chance to see if she catches up and grows a little more...and we want to have a better idea if she is little because that is who she is as a person, or if it's a problem because of her brain injury."

Um, okay. So if it's not just "her"...what could be wrong?

Well, a whole bunch of things...but he did drop the CP word. Cerebral Palsy. Ugh.

He made it clear that I wasn't supposed to worry or get freaked out. It is just a possibility and that we had this same worry with Henry (growing slowly and being really low on growth charts) and he turned out fine and healthy. So, Jill could be the same. But because of her history, he is a little concerned and wants to take every precaution and keep a close eye on her.

Against his orders, the first thing I did when I got home: I googled it.

I see why he might be concerned. Particularly because of her involuntary movements/twitches. They are SIGNIFICANTLY better than when she was younger, but they are still there. He did say that her muscle tone looked really good...which is a big indicator for CP.

I'm not too worried...yet. Why? Well, for starters, we've been through this before. Henry worried me sick because he was such a munchkin. I never knew if it was because of his heart, or just because he was a little dude.

Secondly, I've learned that worrying doesn't change the outcome.

Thirdly, I know that God has a plan and I better just hang on for the ride rather than try and alter it in some way. We will know soon enough if she has any kind of disability. All we can do is wait...we should definately be able to tell by the time she is six months old.

In the meantime, she is still getting her therapy sessions twice a week and we have a phenomenal pediatrician who is watching her closely. Oh yeah, and we have an awesome God that I know will carry us through this, regardless of what "this" ends up being.

And with that, two out of three are wailing. Peace out.

6 Minutes

The other day the TV was on in the background and someone said something about the fact that your brain only needs to be deprived of oxygen for 6 minutes before you die.

I've heard that before.

It was one of those factoids you harbor somewhere in the recesses of your memory.

I probably could have gotten it right if it were a Jeopardy question.

But that day, that little fact...that short sentence...

...had me stop dead in my tracks.

Literally.

I think I even audibly gasped.

I realized at *that* moment how lucky I was...

...that I had three napping children to account for.

The difference between Jill being here...and not...

how long?

How long was she deprived of oxygen?

2 minutes?

1 minute?

5 minutes?

We will never know.

But I am astounded at the idea that just a few more *MINUTES* difference...not hours, not days...but MINUTES...

How often are you 5 minutes late to something?

How quickly does 10 minutes pass when you are doing something you love?

If I told you you had 2 minutes to complete a task, wouldn't you scoff?

6 minutes.

My sweet friend Lisa, who has a special needs child, asked me the other day how I felt about the fact that Jill might have some type of delay or disability...

"I'm not afraid of it.
I'll take Jill any way that God wants to give her to me."

God is so good.

Thrush and an Early Start

After the girls were returned to their crib after their late night feeding, I lay in bed...and felt that all too familiar feeling of stabbing, shooting, burning pain...and chuckled to myself.

Really? REALLY? I mean, seriously. Can't I just be done with all the drama and complications??? Just when I started feeling really good and my incision is mostly healed and even the open part is almost completely closed....I still have a new ache and pain...really???

"Luckily", I had thrush with Henry, so I know in advance what it is and that prescription Nystatin doesn't work for beans. So, rather than take the antibiotic for two weeks in vain (and pain), I'll just nip it in the bud with some gentian violet and high doses of acidophilus (the good cultures you find in yogurt). It should feel better in 2-3 days.

But really. ugh.

It's gotten humorous. Painful. But humorous.

In other, better news...Jillian was accepted as being medically eligible for the Early Start Program!!! Basically, it is a State funded program aimed at helping kids who may have physical, developmental, speech or other delays. It is free to families who are medically eligible (as decided by the staff pediatrician)...regardless of your income level. Woohoo! (We never qualify for any kind of thing like this, so it's kind of exciting to actually get to use some of the services our tax dollars go to...because let me tell you...we have paid *many* a dollar to Uncle Sam over the years!)

The Case Manager and a physical therapist will be coming to the house on Monday to do the initial assesment and then decide from there what the schedule of visits will be. Apparently, they typically come to the house for an hour each week with whatever specialist is necessary for up to three years. We don't know if Jill will have any delays, however, this will keep her monitored so that IF there are any issues, we will have caught them immediately and can begin working with her as soon as possible.

This is very, very exciting to me. My mommy's heart obviously prays that she suffers no lasting effects from the oxygen deprivation, but if there are any issues, I want to play a really proactive role in doing whatever we can to give her the best chance possible for leading a "normal" (whatever that means!) life.

And with that...Miss Jill is wanking. Probably wants to eat. Again.

(and in case you were wondering...yes, I can tell who it is just by the cry...Jill has a high pitched squeal...Lucy just wails like she's been wonked on the head...)

Mini Update on Jill

We had a pediatrician appointment yesterday for Jilly. Everything looks good. Dr. Bravo thinks her shakes and twitches will get better with time (and they have already), although we won't know for a while (months to years) if there are any lasting effects...we actually already have an appointment in January with a slew of physical therapists, child development experts, etc. to assess her abilities so that IF there are any delays we can catch them as early as possible.

Anyway...we also had her liver enzymes re-run...remember how they started out at almost 400 and 500? And remember how normal is between 10 and 30?

Well, as of yesterday, her liver numbers were 62 and 43!!! And the acid levels in her blood were totally NORMAL!!! YIPPEE!!! We are so so so blessed...

We're home...

Yes, we were back at French. At first, we didn't know what to expect but because of the experiences over the last week, we of course presumed the worst. But, things are ok, just a bit more complicated. She had a lot of fluid buildup which was gathering on her left side just above her incision. It has been there since the day of the c-section, and has been getting worse. It is likely infected (pretty sure now, as she has a fever), so she is on breastmilk safe antibiotics, and we have to keep about an inch of her incision open so it can heal from the inside out. Sterile gauze has to be stuffed in and then removed every 24 hours for the next few weeks until it heals up, or the Dr. thinks he can go ahead and suture it back up again.

So, a relatively simple answer, considering we were prepared for them to have to open her back up and admit her with two nursing babies 30 min. away.....God is still good, of course, but maybe a bit nerveracking at times?

-Andy

THIS is what it was supposed to be like!

Lucy and Jill riding together again.


Miss Jill. Could you just DIE??? Ugh. So cute.
The image that once struck terrror in my heart (three kids in a row in the back), is now my most prized memory.
Had Ed MacMahon himself walked up to tell me I had just won the Publisher's Clearinghouse at that moment, I would have shushed him away. *Nothing* has ever brought more joy to my heart.


Holding both my girls. At home. Finally.
Welcome Home indeed.

Jilly's COMING HOME!!!

Gotta get dressed...but Andy just called and said that they are discharging her as soon as we get there!!!!!!!!!


THANK YOU LORD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Pictures: Just Because

Daddy showing me how to feed Jill.
Lucy on her first car ride home.
Lucy and I waiting for the car to be pulled up.
Henry, Jill, and Great Grandma.
Getting to hold my girls for the first time...about three hours after their birth. (Lucy on the left, Jill on the right).


I know the photos are out of order, but blogger is being weird and won't let me rearrange...

Update: Jill's liver enzyme numbers continue to go down tremendously...they are now down from 366 yesterday to 270 today...and from 160 yesterday to 70 today. (Normal is 10-30).

It's Me Again

Hey everyone, it's Jeannett again.

Andy's done a really good job of updating the blog and keeping everyone in the loop with the craziness that is going on around us right now. (He did most of it from his iPhone in case you were wondering...)

I won't go back and repeat anything, but I thought I'd just give you all some insight into what these events FEEL like. For me anyway. This might be a little jumbled and long...but then again, my brain is pretty jumbled...

Having a c-section is terrible. There is already soooo much to deal with and do...and the fact that I move at a snail's pace, am in constant pain, can't shower or dress unassisted, and getting in and out of bed is a 5+ minute task...it just makes it all that much harder to deal with. Not only do I have only part of my family home, but I'm not even in a position to be the mommy I want to be to the ones Ihave nearby. It breaks my heart.

As much as I hate having had the surgery, I know that it was the best thing after all...well, really, it was all that was left. We tried EVERYTHING to avoid it, because I knew that the recovery would be long and hard. And I feel okay with it all because I know that we truly tried anything and everything and there really weren't any other options left. Ultimately, I think that my uterus was overextended and wouldn't contract properly...which is why even with the highest dosage of Pitocin running through my system, my contractions were little bitty rolling hills instead of the steep peaks they should have been.

I never, in a *million* years thought that I would have to deal with the NICU when I had carried my girls to 38weeks, 5 days. Especially when they were both big and pink and looked very, very healthy. But by day 2, Jill who had been my nursing champ, quit nursing. And then the weird shakes and twitches and blinking. It kept getting worse. Nurses started worrying. And you know the rest of the story. Interestingly enough, all through the labor, Jill's heart rate was steady, stable and looked great. When the doctor suggested a c/s, it was for LUCY, not Jill. Jill never ONCE showed any signs of distress. So it makes me wonder if her oxygen deprivation occurred at a different point during the pregnancy? I guess we'll never know...

When they wheeled Jill away to the NICU, I sobbed. I had three kids...and they were all in three different places. Andy was with Jill at Sierra Vista. I was with Lucy at French, and Henry was back home with family/friends. How can a family exist like this? It just seemed like the wrongest kind of wrong to me. No one was together. It just wasn't right.

So, I opted to be discharged as soon as possible so that I could at least visit with Jill (they wouldn't transfer me and Lucy). Leaving the hospital was so awful. As they wheeled me out with little Lucy, the waiting room cooed and awwed and whispered "oh, how cute!" "congratulations!" and I just kept my eyes focused on my feet. I wanted to scream STOP LOOKING AT US!!! THIS ISN'T CUTE!!! THERE'S ANOTHER BABY!!! THERE SHOULD BE TWO BUNDLES IN MY ARMS AND THERE ISN'T AND I AM ANGRY!!! I broke down when Andy opened up the back door and there was only one car seat. This wasn't the happy moment every parent dreams of. This was sad and depressing and heart breaking. There were no happy smiles or excited glances. Just a serious tone and anxiously wanting to go to French to see Jill. We didnt speak the whole way to Sierra Vista. I know that makes it sound like she died, and she obviously didn't and isn't. But that's still how it felt.

When I saw my little Jill again, I cried again. She looked perfect. Big, chubby, a double chin and the sweetest pink lips you've ever seen. But she twitched and blinked constantly. She had no control over her motions. You could feel it even through the tightly swaddled blanket. I fed her a bottle and she wouldn't take it. Andy told me how to hold her differently and then told me when I should burp her and how she liked to be held. It was so strange to realize that you didn't even know your own baby girl. That Daddy had it down and had to clue me in to all her little likes and preferences. I finally handed her to him and he took over like a pro. Cooing to her "Come on my strong little girl, let's show them that you want to go home." "Come on baby girl, Daddy needs you to eat". It both broke my heart and melted it. Andy says that they will forever have a special bond since he spent so many of those first hours alone with her in the NICU. He obviously loves Lucy too, but you can see in how he holds Jill that she has him in the palm of her little chubby hand.

I'm hopeful that she gets better quickly and comes home soon. But I worry about my girl. What Andy didn't mention that the neurologist said is that her condition and symptoms are classic of a DROWNING. I just about lost it. That is not what a mom wants to hear. She did say that any long term effects can be non-existent, severe, or anything in between...and that that"s true of any NICU baby.

My heart aches. My arms feel empty even though they cradle Lucy. My family feels broken and incomplete. But even still I feel blessed beyond measure. Regardless of the outcome, we will be a family soon and I can't wait for my girls to be back together. Thank you from the bottom of my heart for all your well wishes and mostly for your prayers. I'm not really answering my phone right now, but please don't be offended...I just need a little space right now...

Keep praying. We serve a mighty God. That I have never been so sure of in my life.

The pediatric neurologist...

came by to see Jill. Basically, she just confirmed everything else that the neonatal docs had said to us. It's a wait and see game. She hopes and expects that the shakes will go away with time, over a few days to a week. The positives are that she is aware, nursing, and she IS NOT having seizures. The negatives are her liver numbers (which as we know are improving), her tremors and the fact that she was oxygen deprived. If the shakes don't get better in a day or two, she will have a CT or MRI to get a better look, but again, she confirmed the ultrasound looked good.

Bottom line is we still don't know. She said that Jill could be 100% normal with zero issues, or she could be severely disabled with either tremors, learning disabilities, etc. However, she hopes that it will be gone within a week and things will be normal. We'll know more in a couple of days. So pray that it goes away, and that she keeps eating and doesn't need an IV.

-Andy

2/3 are

now home. Jill was doing better when we left, and her liver was functioning better. Her enzymes were in the 470s, where normal is 20-30 for one number, and the other was 300 something, where the normal is 20ish also all on Monday. Today at 11am, the first was down to 300 and change, and the second was down to 160, so definite improvement.

And she took 40cc of food from us before we left, which keeps her gradual increase going, so that is good. She may avoid IV. We'll see.

The pediatric neurologist will be by this evening, so hopefully he confirms what the neonatal doc thinks, or better.

Andy