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Tuesday, May 31, 2011

There's No Place Like It

The H word.

Nurses don't just throw that word around. Doctors hardly ever say it. It's never been said to us before.

Until today.

"We weaned Grayson's flow a to 2.5 today," the respitory therapist told us. "Once we can get him down to one we can start talking about sending him home."

Home.

HOME!

Oh my goodness. Oh my goodness!!! This is actually gonna happen, yall. I've always thought in "ifs" and not "whens", and most of the time I've been too scared to think about anything further than the next five minutes with my babies. But it looks like it is actually going to happen. These tiny babies in the plastic boxes are going to be coming home with me!

It makes me cry. And laugh. And panic a little. I have a nursery to finish! (And by finish I mean start. Did I say OH MY GOODNESS?!?)

(And PS - They're not talking about tomorrow, of course. We still have other milestones to meet. But it's in the not-so-distant future!)

Monday, May 30, 2011

A Thousand Words



These are the two picture frames that currently sit on the dresser in my bedroom. On the left are pictures from the very first time I held each of the babies, back when they were right around a week old. On the right, it's a picture of the first time I held both babies at the same time, right before they hit 2 months.

Look at how far we have come.

The saying goes that "a picture is worth a thousand words" but I see these pictures side-by-side and I have no words. These pictures are worth so much more than a thousand words - they represent a thousand tears and a thousand prayers and a thousand feelings that don't have names.

I don't know what else to say... just LOOK at how far we've come!

Wednesday, May 25, 2011

Two Months!


Both babies at once, for the very first time!


To my little loves,

Today you are two months old! Two months! There was a time that I didn't think I was going to get two days with you, so two months seems like such a huge accomplishment and an even bigger blessing. Two months - 61 days, to be exact - doesn't seem like that long but I already can't remember life without the two of you. How did I live without this enormous love?

Audrey


birthday // one month // two months

You love your paci and your daddy's voice. You're such a snuggler now and your favorite place is curled up on my chest with your head on my shoulder. You have the biggest most gorgeous eyes I've ever seen on a baby and the nurses all love your cheeks and laugh about how active you are in your bed during the "quiet times". They say you look like your daddy but I don't really see it, I think you have my nose and that you kind of look like my mom (your grandma) did when she was a baby. You FINALLY hit three pounds just this week and now you clock in at 3lb 7 oz, which is 2lb 2oz more than what you weighed when you were born.

Grayson


birthday // one month // two months

You just discovered your love for the paci too and you are so funny to watch with it, because you chomp on that thing like it is your job! You sleep like a champ (can we keep that up once you get home please?!?) and you make the cutest faces when we talk to you. In the picture of you with no tubes on you look just like my Grandpa did, you'll never get to meet him but I know that he would have loved you so very much. We tease you about being a wimpy white boy but you always prove us wrong in the end, and you're still my chunky monkey at 3lb 12oz (up 2lb 4oz since birth).


Look at how far you two have come in such a short time! I have said it a million times but I will never be able to put into words just how proud I am of you, my sweet little babies. You have shown me what is important in life - and there is nothing more important to me than the two of you. You are absolutely my reason for breathing.

I love you two, all the way to the moon and back.
-Mommy

Sunday, May 22, 2011

Joyful in Hope



Look at how cute my baby boy is!



No really, how freakin cute is he?

Oh, and did you notice? Did you notice he fact that there are no tubes on my baby boy's face? He extubated accidentally during his bath this afernoon and the respitory therapist and his nurse both said it would be silly to reintubate him because he was doing so well. In fact, he was doing SO well that they let me take these few pictures without anything on him before hey hooked him up to the cannula.



That's right, I said CANNULA! They let him skip the CPAP and go straight to the cannula this time! He wasn't too sure about it at first (as you can see), and the air flow made him really sneezy. But as soon as he settled down he did really well with it! Fingers, toes, and eyes crossed that it sticks this time. Prayers that he's rested well and can do it. I know he can!

We are so blessed. God is so good.

Be joyful in hope, patient in affliction, faithful in prayer. -Romans 12:12

Friday, May 20, 2011

Let's Play a Game!

First one who can figure out what's missing in this picture of Audrey is the winner...




That's right! She's off her CPAP!!!! Another HUGE step!

(Oh and PS, the nurses are all pretty sure that it should only be a few days before Grayson is extubated again, he's almost back to where he was when we did it the first time. He just got lazy about breathing. Love my wimpy white boy!)

Thursday, May 19, 2011

Woah-oh, living on a prayer

Today the babies are 55 days old.

This is significant because if they come home on their due date (which is the canned answer in the NICU, most babies do) then we are halfway there.

It's a bittersweet day though. Grayson had to be put back on the ventilator this morning. It's frustrating, but not out of the ordinary in any way... in fact, his doctor told us that "if he had come off and stayed off the first time, it would have been very abnormal." He had some fluid in his lungs and the carbon dioxide level in his blood was elevated. He was just working so hard to breathe and he was wearing himself out. It's not that he's doing bad, it's just that he's not supposed to have to be doing it at all. He's not supposed to be on the outside, he's not supposed to have to breathe on his own, he's supposed to still be a fetus.

It's frustrating and it feels like a punch in the gut, but I am still so very very proud of him. He's doing the best he can, and he's really doing so well. They assured me that it will just be a few days, a week tops, to let him rest and then we'll give it another go. He'll get it eventually. I have so much faith in him.

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. -Galatians 6:9

Wednesday, May 18, 2011

Bright Eyes

I forgot to update this amidst all the CPAP excitement (which, by the way, all of us on the CPAP are still rocking it) but the babies had their eye exams on Monday. Being born early puts babies at risk for something called Retinopathy of Prematurity (affectionately known as ROP), which is where the blood vessels in their retinas don't get to finish developing normally and can become "disorganized". ROP can cause vision problems at best, and retinal detachment or blindness if it is severe enough. All preterm babies are at risk for ROP, but especially babies with extremely low birthweights (um, check and check) and babies that have high oxygen reqirements for any amount of time (check there for Grayson too, from back when he was on the oscillator).

Needless to say, we were kind of holding our breath for this exam.

And while we were anxious to get the exam done and get some answers about the babies' eyes, the timing was horrible for it. The exam can be kind of stressful for the tiny ones, and I can totally understand why because their nurse gave me a very graphic description of the proceadure and I am SO glad I was at work and missed it. But I worried because when babies are so tiny like my babies are, stress can affect their respitory funtioning. And and I hated that this stress was coming so soon after their transition to CPAP - about 24 hours for Audrey and only 30 minutes for Grayson.

I was terrified that one (or both) would end up back on the venitlator.

They proved me wrong.

They both handled it with composure that would rival someone ten times their size (because seriously? I don't think I would have handled that well). The hated getting their eyes dialted but uh, does anyone like getting their eyes dialated? And afterwards they both bounced back well and settled down quickly and no one ended up back on the vent.

Oh, and the icing on the cake? Both exams came back well within normal limits. No ROP!

I should have never doubted my babies.

Monday, May 16, 2011

CPAP, Part 2!

Today was Grayson's day to shine... and shine he did.

My precious baby boy waited patiently for his turn (I'm glad Audrey has spunk like she does but I'm equally as glad that Grayson is so laid back!) and when they finally (FINALLY) took his tube out too he settled right in with his new gear and my baby breathed on his own.

I have two breathing babies.

I just don't have words for the beauty of the last two days.

In His hand is the life of every creature, and the breath of every human being. -Job 12:10

Sunday, May 15, 2011

CPAP!

Today has been an exciting day!

The babies' team was all set to extubate everyone after rounds this morning, but Sassy got a little impatient and pulled her own tube out before it was time. (Have I mentioned yet that I FEAR the teenage years with that one?) Luckily their team is awesome and acted fast and got her hooked up to the CPAP before she crashed. She took to it like a champ and is doing AWESOME!!! The mask looks uncomfortable and she gets fussy every now and then but it's just going to take a few days for her to get used to her new setup. But her vitals have been stable and she is breathing. My baby is breathing!

Since Audrey's extubation was so, um, exciting, they wanted to be able to keep a good eye on her and decided to save Grayson's for tomorrow. He's ready though, he is so ready. He's been satting in the high 90s all day - on only 24% oxygen - he's letting us know he is ready.

I wish I had words more sufficient than thank you when it comes to your prayers. I don't think I could ever say it enough times to relay our gratitude.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. -Philippians 4:6-7

Saturday, May 14, 2011

Breathe on me

It has been seven and a half weeks that the babies have been on ventilators.

Two of those for Grayson were on the oscillator.

There have been no less than 11 accidental extubations and subsequent re-intubations between the two of them. About half of those were the babies pulling their own tubes out.

There has been a five-day round of steriods for each baby to help mature their lungs.

Tomorrow, those tubes are coming out - hopefully, for good.

The doctor wrote orders today for the babies to move to C-PAP tomorrow morning. The C-PAP stands for "continuous positive airway pressure". Basically, it is a mask they wear that blows a continuous stream of air to keep their lungs partially inflated between breaths, which makes breathing less work for them.

They will be getting some extra support but what that means is my babies will be breathing on their own.

If you can spare a prayer, pray for us for tomorrow. Pray for doctors that can work swiftly and steadily. Pray that my babies stay strong and take to the change well. Pray for my babies to breathe.

"Come trickle down and save the world
Two hands that I can't see
Come breathe, come breathe,
Come breathe on me"
-Jennifer Knapp, Breathe On Me

Friday, May 13, 2011

Hiccups

I had a big entry planned in my mind.

It was going to be a pretty negative entry. I was going to complain about some stuff, talk about some people, unload some petty things that have been weighing on me.

But then, when I was holding Audrey this afternoon, we got this...

Untitled from Jessica Lee on Vimeo.



And really, is there anything else that matters? Anything besides those big eyes that look for us now and those adorable hiccups and that smile that slays me every time and the fact that this beautiful baby girl and her brother are living, breathing miracles?

They are my whole world. And they are the only thing that matters.

Sunday, May 8, 2011

Happy Mother's Day!



Out of all the Jessicas I've ever been - daughter, sister, student, friend, teacher, wife - Mommy is by far my favorite

Saturday, May 7, 2011

Why?

I have a lot to write about.

Like how going back to work wasn't so bad. And about the March of Dimes walk I did this morning that was wonderful and so fufilling. And I need to make a big ol' update about the babies and how AWESOME they are doing.

But today... today, a new baby was admitted into our NICU. Not an uncommon occurance, but this baby is different. This is the first baby I've seen where the nurses have whispered "probably won't make it".

It shatters my heart.

I see this mom, still in a hospital gown and hooked to an IV, and she looks terrified and I want to hug her and tell her it's ok but the fact of the matter is it's not ok. This woman is living out my greatest fear right in front of my eyes, the fear that I danced dangerously close to and somehow escaped, it is her reality now and it absolutely shatters my heart.

I've asked God why a LOT throughout the last eight weeks. Why me? Why us? Why my precious, tiny babies? Why did this happen to me, and not my sister-in-law, or my three (yes, three) best friends who are also pregnant, or the woman in line behind me in Target? Why didn't He stop it from happening, make me go to the doctor earlier, slow my contractions? Why?

Tonight though, I'm asking a different kind of why. Why have my babies done so well? Why do I get to keep them and other women don't? That baby is no younger or smaller than what my babies were (because let's face it, my babies were as young and as small as they could be and still be considered "viable"), they were born at the same hospital with the same medical team and the same care, so what makes them different?

I know that I will probably never know the "becasue" to my "why". I just know that my babies are special, they were chosen for this and this is the path that my family was given to walk and there's no turning back now. And I know that I am incredibly lucky.

"Before I formed you in the womb I knew you, before you were born I set you apart." -Jeremiah 1:5

Wednesday, May 4, 2011

9 to 5

Well, more like 7 to 3 since I'm a teacher, but you get the idea.

I'm going back to work tomorrow.

I had my six week post partum appointment today - which was oddly hard and emotional - but they officially cleared me to go back to work. So back I go.

I have mixed feelings about this. On one hand, I'm kind of glad. It'll get me out of the house, back around people, give me a sense of purpose (because OMG being a NICU mom can sometimes make you feel so helpless). On the other hand though, it almost feels like I'm leaving my babies. I mean, I leave them every day, multiple times a day, but this seems so much more. My NICU time will be cut almost in half (although some may say that's not a bad thing) and, realistically, I'll only make two touchtimes, three at the most. I feel like I'm going to miss so much! Thank goodness for nurses who don't mind crazy mamas calling all day long.

Lucky for me, with the whole teacher thing it will only be for three weeks. I can do three weeks. Besides, like Chris likes to tell me... we have the best babysitters in the whole world :)