This is our story....The story of our journey as a family of four

Monday, March 29, 2010

Quick little update

Hello all!  Here is the latest on the Easton update.  Last week we "played" the game as Justin the neuro resident called it, and let me tell ya it was a game that wasn't very much fun.  As far as Easton goes he was great, as far as those pesky cultures go...he was not.  It took until Tuesday to get a negative culture...I know you are all thinking Tuesday?! that was forever a go, but they were taking much longer to grow out than the normal 24 hours so we weren't confident that Tuesday's was truly negative until Saturday night.  So finally Easton was no longer NPO every morning.  The reason why he was NPO was because it took until later in the week to see the trend that they wanted to see in the cultures to convince them that the EVD was not contaminated, so finally baby E caught a break.  No contamination, No new EVD needed, just have to ride out the infection.  We need 10 days of  negative cultures before they put in a new VP shunt, so the way I do the math it is looking like Friday we will be headed to the OR...neuro has neither denied or agreed that this is the day so lets not quote me on this, I'm just assuming. 

Let's see what else is going on with our lil man.... he has gotten to wear all sorts of fun hats last week...and by hats I mean the gauze wraps to protect the EVD.  I think Dr. Li should give some lessons on head wrapping.  He came back from the the OR with his lil head wrapped perfectly, then about Tuesday they changed the dressing, and it all went down hill from there.  Now I am not poking fun at anyone because I will be first to say I tried to wrap his head and he still ended up with a funky turban.  Lets see, he's had horns this week, he's looked like Marge Simpson.  It's been kinda funny to see what his hat looks like when I walk in every morning, and I have some cute pics that I will upload asap.  But there he will be, looking a bit like a hot mess, and he'll just look at you, happy and content as can be.  Melissa his night primary and I died laughing one night.  He's the sweetest little bub ever, not to be a nin about it, but he really is.  He just goes with the flow, and he's got this look that he gives that just melts your heart.  He is just so easy to fall in love with.  He has been doing those sleepy twitch smiles that I love so much...I am very eager to write one down as his first smile, but I'm holding out, holding out for the real deal.

As I'm sitting here writing all of this about him, it's making me miss our little guy so much.  Today is the first day that I havn't seen him at all, and to be honest I want to cry, but I just keep telling myself that it would be best for me to keep me and my stinkin' cold away if I can help it. When I got home from E's shower (more on E's shower tomorrow, I still don't have the words today for it <3) last night I couldn't tell if I was really sick or just really tired, and woke up this morning knowing that I couldn't go in and see him, and I was actually relieved I didn't go in last night when I got back up to B-lo.  Chris (his daytime primary nurse) told Cody today that she thought he seemed a little off, and he had a bit of a rash so by the sounds of it he has a little something going on too, and when Cody got in there to see him he could see that our lil guy isn't feeling too hot.  Don't be alarmed, everyone there just thinks it's something viral.  He just didn't eat as much today, and just isn't himself.  So by the sounds of it maybe mama shared a lil more than her love :(  but in case he has something different I'm going to keep my distance so he doesn't catch my cold on top of it.  We need him as healthy as can be so that he can still go in on Friday.  I just wish they could suit me up in some anti-germ garb.... shoot, I wouldn't mind being covered from head to toe, all I need are eye holes so I can see him, but really it is best not only for him, but the other 5 babies in his unit.  sigh.

In Nae Nae news.....we have a 2 year old everybody.  Caidence Noelle turned 2 on the 22nd and I can not believe it.  Now if you ask her if she's 2 she'll say "no, no 2" with her little hand waving in the air, like you just asked her the silliest question ever.  She is a riot, and as much as I wanna say "no, no 2" and keep her 1 for ever she is definitely growing up and doing big girl things.  It makes me happy and sad all at the same time.  She's a very independent little girl, with great big sis qualities about her.  I've always known she would make a great big sissy, but this last week she has just amazed me.  It's like a switch flipped...lil miss independent now picks out her own clothes, and jammies.....whoa, who wants to wear jammies when you can wear leggins and tees to bed.  She now tries to jump into her pull up at night, she's got all of these fancy new foot moves, and she even does tricks on the stairs that about give her mom mom a heart attack, but daddy insists that shes just fine, and she is.  Aunt Jill got her a fancy pair of red cowboy boots and today she was practicing standing on the heels of them.  It just looked like a very big girl thing to be doing.  She's growing up that lil one.  She is just such a very sweet girl, but don't worry she still has the sass that I've always talked about (that really hasn't gone anywhere, nore do I really expect it to anytime soon).  Oh and "NO" is her favorite word, as I am sure it is with many 2 year olds but I think Caidence over uses the word a bit.  I keep telling her that we need to work on that a bit.  As I'm sitting here talking about her, I am now missing her like crazy (she's at the Rondeau's her new 2nd family!)  Oh these kiddos of ours...I just can't wait until we are home, and can be together all of the time.  I can't wait to love both of my babes up at the same time, I feel like I'm missing out on things with both of them, but I just keep telling myself (and Cody) soon enough we will be home...soon enough (although Caidence may miss the endless supply of cookies, cupcakes and her pick of a new beanie baby everyday....I'll be first to say she's been spoiled here at the Ronald McDonald house, home just isn't going to be as....well "sweet" for her, but I'm sure she'll be just fine with going home). 

I will try to add some picks tomorrow, but right now I'm going back to bed.....just wanted to do a quick lil update.  Hope all is well with everyone! Love and miss you all!


Sunday, March 21, 2010

2 steps forward, 1 big step back...

Well, I know my last blog was so upbeat and there was even talk of home however about 4 hours after I wrote that blog we got a phone call saying that he was septic...Seriously?! we thought.  Never ever had I imagined when we put him into his crib on Wednesday night there was something wrong.  He acted fine, which just goes to show how fast an infection can occur.  He never even had a fever, but I guess after we left he wouldn't eat as well for his next feed.  It was about 6am when he got listless and went apnic so many times that they had to intubate him because a little stimulation wasn't snapping him out of it as it usually does.  He was ghostly in color, I honestly can say I have never seen anyone as pale as we saw our baby that morning.  Heartbreaking.  They did a CBC and of course it showed a left shift as everyone knew it would.  They started him on 3 heavy duty antibiotics before Neuro was even there to tap his shunt.  As we sat there and waited for the results of the culture to come back he was limp...did not try to open his eyes, just layed there still....letting the vent breathe for him.  It was so hard to see him like that.  It wasn't too long before the Gram Stain came back, and it was positive just as they knew it would be so off to the OR he went a little after lunch time. 

They removed his shunt and put in an EVD, which is an external drain.  Sounds scarier than it is...but basically he has a tube running from his head into a large syringe by his bedside and then after the monitor how much he's drained, the CSF goes into a bag.  It does the exact same thing that his VP shunt did but it's on the outside, and they can actually monitor the flow this way.  After surgery he got another blood transfussion, which was much needed, and it pinked him up a little bit.  He was of course sedated from surgery and just wiped out completely.

I know that this is probably horrible to say but for the first time I was afraid to touch him....I didn't want to talk to him because I didn't want to wake him...I didn't him to wake up and have all of this stuff poking him and proding him.  I didn't want him to try to cry and for me to not even be able to pick him up to console him.  I was scarred....for the first time in NICU I was really scarred.  Don't get me wrong, I hated him going in for all of the other procedures he went through, but we were prepared for them...we knew he needed them.  Even the shunt revision...we expected it at some point, it just happened sooner than we had hoped, but an infection.....we were not prepared for that.  Of course we knew that there was a chance but the chance was a so small.

He slept all day on Thursday, Friday and it wasn't until Saturday that he started to stir.  It didn't help that everyday they were trying for a PICC line and giving him small doses of sedation for the procedure, but to be honest I'm not sure if he would've tried to wake up before then or not.  Occasionally he would try to breathe over the vent, but most of the time he just let the vent do it for him.  Poor bub is all we kept thinking.  Yesterday they finally got the PICC line in, sort of.  It took them 4 times fiddling around with it, and 4 xrays to realize that there was no way that it could be used as a PICC, so he has a deep IV in that location so at least it wasn't all for nothing like the other 2 days.  Not only is is head wrapped, and his belly bandaged up he has and IV and now  the deep IV (which just means they can push more volume through) but he has lil pricks all over his body from them trying for the PICCs and all of the IVs....I'm telling you this is the worst our lil sweetie has looked, and felt with out a doubt.

As far as the bug that started all of this....all we know is that the gram stain was gram positive, and that it is the enterococcus bacteria.  When Dr. Li opened his tummy back up to remove the drainage tubing he said that there was more murky looking fluid down there then there was in his brain, and now that makes sense since enterococcus is typically found in the GI tract, and with the tubing going from his belly up to his shunt, it's like a free ride to the CSF.  We are asking how and why, and unfortunately we may never know, but whats important is that we were there, and they caught it early.  I don't even want to think of how much scarier it could've been if we were home.  We know that he is in good hands up here, and we love this rotation of dr's.  His attending, and fellow are amazing.  They really go out of their way to explain and show us things.  And the attending makes sure to get everyone involved that could possibly help Easton.  He had him on 3 antibiotics that he knew would kill the bacteria, but he called Infectious Diseases down to let them make the call of what exactly he should be on.  There isn't even the slightest touch of arrogance about him, he said they would know best so he called them, twice, to get them down there. 

On the up side, last night Easton really started to stir, and "buck" the breathing tube, so they knew it was time to extubate.  It was about 8:30 and he was ready so they did it.  He was restless but took that bink like he has never taken it before.  Even with a sore throat from being tubed for 3 days.  We got to hold him, which is really all that he wanted and even though it was a little scary with the drain, it was so nice to be able to soothe him, to hold him, to comfort him and honestly to give him the only thing he wanted.  I gave him a bottle...only 4 mL, so it wasn't much but they are going slow with the feeds since they don't know where the bug started...but he took the bottle, and of course wanted more.  It was great that he took the bottle because it saved him from another tube being put down his throat. He was alert and just looking all around, as if he'd forgotten what that place looked like. Daddy took a turn with his boy, and I have to admit I got the sweetest picture of them, which I will post soon. Just wanted to let you know that he's back in our arms though! That's it for now...oh I guess I should say that we need 7 days of CLEAN cultures before they will put his VP shunt back in so we just need the antibiotics to kick in, which I am hoping that yesterdays results will be negative today.  But it looks like everything is going as it needs to be in order for Easton to feel better.  Poor sweets.  Please pray for a speedy recovery and smooth sailing from here on our for our little man.  The nurses said they aren't even going to use the word "home" anymore because everytime they talk about it something happens, so they are now going to use the word "zoo" to see if that fingers crossed this is it and we will all be going to the "zoo" shortly. 

Wednesday, March 17, 2010

Our first month as a family of four

March 17th,  oh happy day...Happy St Patricks Day and Happy 1 month Birthday Easton!

I can't believe it's been a month....Cody and I woke up this morning, looked at each other in disbelief, Easton is 1 month old....and then to go one step further, Caidence will be 2 in less than a week.....Where has the time gone.  I usually kind of shrug off that saying, but seriously.....where has the time gone?!  As I rocked Easton to sleep tonight and just starred at him in amazement, I couldn't help but to be a little sad about what he has gone through in his first month here.  But at the same time, I was so happy, so proud, so amazed.  He truly is exactly who we knew he would be....a lil toughie, who is so sweet, who loves to snuggle now that he's allowed, who's got spunk and a touch of sass.  He's got that way about him, one look from Easton and he just melts your heart.  He's perfect.  He's simply just him, and we would want him no other way.  He's got me wrapped, and not only me, a few of the nurses and Dr's in the NICU too! (He's quite the ladies man, and he tends to like them a lil older and prefers brunette's lol)

Originally, I had planned on doing each day on the blog to update you all on E, but lets face it, there is just no time for that so I am going to just do a recap of each week of what the Rapp family has been doing for the past month, here goes nothing:

Week One... 2/17/10-2/23/10
Well, I'm sure most of you read about our exciting trip to Buffalo and the details of baby E's arrival.  Looking back I still can't believe that is how Easton got here on that wintery Wednesday.  His closure surgery was on  Friday, and went as expected....minus the bruising, that really wasn't expected on our part, but he healed up beautifully with the help from a little phototherapy.  Through the weekend we pretty much just watched him sleep, and they monitored his pain, and gave him meds when needed.  He was getting fed through an OG feeding tube. On Saturday, Cody and I got to see Caidence for the first time since was wonderful, even if she was a little under the weather, and really only wanted Aunt Amy :) Easton opened both of his eyes for the first time and squeezed mama's finger tight on Sunday.  Monday was when he got the lights, and the special "spidey vision" to protect his eyes, and at this point they were still just monitoring his BP and checking the circumfrence of his head to monitor the buildup of CSF.  We started to see a pretty steady increase by Tuesday, all in all though it was a pretty good week.  Everything kind of went just as we were told it would way back in January.  At this point we were at the Ronald McDonald House with Nae, and Code and I were just taking shifts at the hospital with E and at the RMH with C.  Trying to adjust....
                                                    right before his closure procedure
a little phototherapy to help with the bruising
Week Two 2/24/10-3/2/10
On Wednesday Easton had a few tests (an echo of his heart and a full renal workup) to rule out any other causes for his high BP.  They all came back just fine, and as it turned out, he was still in pain, and with the help from some more fentynal he was able to rest comfortably.  His head circumfrence continuued to grow little by little, day by day so by Thursday his fontanel was pretty full...still soft, but full.  E's neurosurgeon was still unimpressed after he saw him Thursday and we were told that he wouldn't jump right into the shunt, well long story short, Cody got back early Friday morning still thinking that Easton avoided the OR for another day, and within just a few hours, Dr. Li did rounds early, and we got the phone call.....Easton was going in for a VP shunt later that morning.  Apparently he impressed Dr. Li.  I have no idea why but this procedure shook me up a little more from the closure.  It really doesn't make sense because the shunt wasn't as invassive, but i remember being in the OR hallway talking to anesthesia and just starting to cry.....The second Friday in a row in the OR for mr. Easton....just didn't seem fair.  But after we got the thumbs up that everything went well, we felt much better.  Saturday was a very lax day, E was still intubated and on pain meds for most of the day, however Sunday was a big day for him..... he extubated himself around 4am and when I got there in the morning we was no longer on a warmer.  Easton had graduated up to a big boy crib.  Another big day was Monday, E was 12 days old and mama got to hold and bottle feed him for the first time, and then daddy got his turn too....and it was amazing for all of us!  Finally we got to snuggle our baby, even if it was just for feeding him, we waited so long, it made it that much sweeter!  His lil tush fit perfectly in our hand, he was just a smidge smaller than Nae, but he didn't seem too small....he was just right. Neuro took his wrap off and I gave him his first sponge bath.  What a week it was!  Nae had an exciting week too, she went and stayed with the Rondeau's for a sleep over... how exciting it was for her...she loves it there, and I love her being there, she feels right at home!
daddy giving E some lovin

Week Three  3/3/10-3/9/10
Easton continued to bottle, and was doing very well, and hit his shift minimum every time...lil champ.  He got his stitches out from his closure procedure on Friday, and on Saturday I gave him his first real tubbie!  Not gonna lie, it was a little akward without the handy net to lay him in like the ones we have at home.  All in all though, I think I did an ok job, and even got to put his leads and stuff on......I was beginning to feel very official taking his temp and what not lol.  Sunday was a not so fun day for lil Easton.... his bradicardic spells were through the roof.  He was all over the place and had more in one shift than he would in a whole day.  This was probably one of the hardest days so far in the NICU.  No one had answers, but I told the nurse that I had a gut feeling it was his head.  Monday we did our best at working on bottling, and when he was very alert he did very very well.  He had a CBC done to check for infection to see if that was the cause of the Brady's and no such luck.... His head circumf kept climbing, but neuro was still unimpressed...I told the nurse that I never want to hear those words from them again.  Tuesday was such a beautiful day that we decided to treat Nae to a trip to the was so nice to get out and spend part of the day with her and Cody, and she had a ball.  Loved every minute of it, and I loved every minute that she walked with her hands in her pockets lol.
fun at the zoo
Caidence Noelle
just like daddy

Week Four   3/10/10-3/17/10
Well....on Wednesday Dr. Li was impressed again, and E was back down in CT, which revealed just what the sonogram did, that his right ventricle was collapsed and the right continued to grow.  Poor lil E needed a shunt tap to extract CSF so that they could check for possible infection.  It was a definite that he needed a revision, but they wanted to make sure that there was no infection before they went back in.  Never have I ever felt like a weight had been lifted..... I was relieved that they were going to tap his shunt to check for infection...because then we would have an answer to all of the bradicardic spells he was if only they could tap it.  First the resident tried, for a good 45 mins, then he had to call the NP, and she tried twice and got nothing, so then Dr. Li came in and tried...barely any CSF, but enough for the Gram Stain and culture.  Well, the Gram Stain came back negative (PHEW) so he was on the board for Friday.  Another Friday another trip to the OR for his shunt revision.  I never for a second thought I would be happy about a shunt revision, but after that week we knew more than anything that was exactly what he needed....and we were right.  I hate to say it but this is when that mama's intuition really comes in handy.  Easton handled the surgery like a pro, and the trip downstairs was becoming routine for him, but no worries, I put the kibosh to that when we got back upstairs.....I told him no more!  He was extubated and bottling like a champ just hours after the procedure.  He did have to get a transfussion after the surgery just because of all the blood they had taken from him his first few weeks of life, and now his numbers are right where they need to be.  We played with him for a few hours that night...he was wide awake, and more alert than he ever has was a beautiful sight to see.  Easton has been a lil champ ever since, he has started to breast feed, and still bottles and just looks amazing...back to his old self again.  Since E was doing so well we decided to treat Nae to another fun Buffalo adventure and we took her to the Science Mueseum and she loved it.  It is nice to be able to do some fun things with her while we are up here.  It's so refreshing to get outta the NICU every once in a while and just enjoy Nae for a while....As of right now she still feels like the only child and I know that we are approaching the days when she will realize that "Eas" isn't just a baby on the camera, so I love giving her that extra 1on1 time while we still can.  I know she is gonna love E up when she finally gets the chance to meet him.....I just can't wait!
just before he went down to CT
looking at the 4 nurses and 2 lady Dr's staring at him...i think he's saying "ya know ladies, a lil privacy while i'm in the tubbie would be nice" lol...really i think he's digging the attention :)
just missing sissy
there she is at the science museum, having a blast

Well, that's it for now, and that's our first month at a glance!  If  I could I would go on and on forever, but Code always says I write novels so I'm trying to condense lol.  We really appreciate all of your love and prayers that you have been sending our way.  You have no idea how much it means to us.  We love you all, and can't wait to get home!

Monday, March 15, 2010

Picture Post, Daddy Gots it figured Out!

Hey There Bright Eyes!
Sleepy baby!!
Mom Mom giving the Little Man Some love!
Daddy's turn!

More to Come when I get the New photo's uploaded on Computer!!

Love you All!!!

Bear With Me, Daddy's First Post

Hello Everyone!
I hope this message works out, this is Daddy Rapp and the first time i've tried to post anything, little wifey usually handles this but i thought I should help and participate.  Today is March 15th and right now I'm carin' for little Nae Nae, but she is taking her afternoon nap right now so i got some free time.

Little E is doing very well after his 1st revision of his shunt, the bradycardio's (not sure if that is how you spell it) have definity decreased but still has them once and awhile, I'm praying its more of a premie side affect which i've been assure is a good possibility.  He is bottling like a champ and Mare and him have been working on the breastfeeding bit....he does well but I think he gets impatient with the boobies and wants the bottle. but those two will keep working on it and he'll get it I'm sure!  So right now he is just resting, eating, and pooping( he is a pooping machine!).  Hopefully this revision works better then the first and he keeps getting stronger and we can get home, we so desperately miss home.

Well now I will see if I can get some pics up, I don't want to over work myself with the first post!  Love all of you and thank you for all your support!

Cody, proud Dada dada

Thursday, March 4, 2010

Easton's first week at a glance

I really wanted to update this more often to keep you all filled in, but
sometimes things just don't go as planned, and I'm only about a week behind so I'm thinking it's not that too bad....but here's a tid bit of whats been going on with E in the NICU, day by day....with pictures to show his progress!

Thursday, February 18 2010
   Easton pretty much just slept his first day in the far as breathing goes, he was on C-Pap which is a forced air flow, just to kind of remind him to breathe.  After being on that through most of the night he eventually was intubabted, then extubated, and was then just on a cannula.  He had an OG for feeds, and an IV for fluids.  All in all it was a mild day for baby E minus all of the changes in his breathing aids, which was actually a lot for such a lil guy.  We met with Dr. Li, and he told us that the actual leision was small, and that it looked to be lower lumbar, however his function level was not acting like it was a higher level.  What in the world we thought, but again, it was going to just be one of those wait and see situations.  He showed pretty good movement in his hips and his right leg, but again we had to wait and see.  This pic was taken at about 3:30am on Thursday so our babes is only hours old....and this shows his on the C-PAP.

Friday, February 19th
   Today was a pretty big day for our little was his closure procedure.  We got to be with him all morning, and give him pep talks, and we knew he was taking notes because his sweet little eyebrows kept going up and down.  I'm sure he would've opened his eyes, if only they weren't so swollen.  We met with Dr. Li and his resident, and they went through the whole procedure again with us.  He was scheduled for 11:30, and of course, as all the NICU nurses warned us, hospital time is always about 2 hours behind.  And so it was.  We took him downstairs at about 1:20, and as we stood in the OR hallway talking to the anesthesiologist, I don't know if I have ever been more scared.  He was just so little...too little to have to go through this, but we knew that it was what we needed to do for him, and so he was off.  He finally came upstairs about 4:20ish, and we got to see him once he was all settled.  There was our little man, all bruised up, intubated and out cold (which of course we wanted him to be for the pain aspect of things).  Of course his leision had a new dressing, so neither Cody or I ever got to see his back before it was the delivery room, it wasn't an option, and once they had it wrapped up, it stayed wrapped up to prevent infection. The only one that did was my mom because she happened to be down there when Dr. Li first looked at it.  For the rest of the day they kept Easton sedated and on pain meds to help keep him comfortable.  Today Grandpa and Mimi got to come up and see Easton for the first time :).  It was a big day for Easton, and the way we looked at it was well, together, we got the first big one under our belt.

Saturday, February  20th

He stayed intubabted from the surgery, and was given pain meds on a pretty regular basis to help keep him comfy.  The first time he really started to stir was at about 4:05pm....he opened his eyes as much as he could, but his whole little body was so swollen from the surgery and them pumping all of the fluids into him.  He had many visitors today,Grandpa and Linda, Kane and Amy, and Shan all came to see our little man.  He showed great movement in his hips, and some left leg movement but we were so unsure of the extent.  His right leg, which was the leg he moved more pre-op didn't really move much, but it was the more swollen of the two.  He was very sensitive to our touches, and I'm sure that it was because his little body just ached.  He was on an IV and was given lipids to help nourish his lil body.  On a Nae Nae was the first day that we got to see our Caidence since I had kissed her goodbye on Wednesday.  Kane and Amy snuck her into the cafeteria and Cody wheeled me down to see my baby girl!

Sunday, February 21st
    Ahh sweet day today.....sweet day of firsts.... today  was the day that Easton Kent really really opened his eyes.  We loved seeing those little peepers.  He held mama's hand tight, and he got his first 1/2 oz of breastmilk through the OG, and he tolerated it well.  Again today they just kept him pretty comfy with the pain meds, and he wiggled his tush all over the place.  We saw some left knee movement today, and again his right leg stayed pretty much the same with only slight movement, but we'll take it!  His legs just made me want to cry they were that swollen.  He can lift his head from side to side, which just shows how incredibly strong he is.

Monday, February 22nd
    Another sweet day.  We walked in in the morning and there he was, sunbathing.  We knew this all too well from Miss Caidence.  His bilirubin was up, but not too bad- but they put him on phototherapy to bring that down, as well as to help break up the bruising since it was so bad.  We met with Amy, the PT and she repositioned him a little bit so that he looked less like a frog on a window.  I massaged his swollen little legs for quite a while today to try to get the fluid out of them.  They were weaning him off of his pain meds, and they extubated him around 6pm, and put him back on a cannula.  He showed movement in both knees, but was much stronger with the left, but in all fairness he had been moving it alot more.  They were taking him off the lipids, and bumping his feeds up to 20mL every 3 hours via the OG.

Tuesday, February 23rd
   Today Easton got a pretty sweet little cushy bed to lay on.  Amy the PT called it the mashed potato bed, and it was really cool because you could form it any way you wanted.  After she played with it a while, E looked much more comfy.  Since he was extubated, his pain meds switched from Phentonol to Childrens Tylenol....yes that's kind of a huge difference, and the Tylenol was not cutting it, so in the morning they gave him a one time dose of morphine to help him with the pain.  His blood pressure was through the roof so this became a concern.  His team  of Dr's ordered a whole workup of tests to be done, which were kind of scary and a little overwhelming.  He had a renal workup done today to make sure everything was good with his kidneys, and that came back good, so that was a huge relief.  The phototherapy lights were gone, and they let his IV run out at 12:30, so sweet baby boy was relying on mama's milk to keep him nourished :) I did get to "hold" Easton up for a few seconds so that the nurse could change the pad under him, and Cody got to do the same thing at night! :) Now that the only tube he had in his mouth was the OG we got to see his perfect little lips.  They are so tiny, and remind us so much of his sissy's when she was little.
Speaking of sissy, she's been haning out at the Ronald McDonald house with either Cody or's a cute pic of her just hanging in the room, playing, and watching non other than "shturat".  She's doing pretty well with everything, and I'm not really sure she understands.  She will look at pics and say his name, but I don't think she knows that in just a short time, that picture is going to be a real baby, at her house.  But I know that she will be an amazing big sis.  She's already such a helper.  And I really can not wait for the day that they can finally meet <3.

Wednesday, February  24th
     Happy Birthday Easton... already 1 week old!  Today Easton had a few more tests done, he had an echo of his heart, which came back normal, and an ultrasound of his ventricles in his brain,.  His head circumfrence has increased 1 cm since birth so talk of a VP shunt started.  Cody and I were okay with that, we were almost expecting it, and it was tentatively on the books for Friday.  They up'd his feed to 30mL's so he is almost up to a full feed!  His blood pressure was through the roof during the night, so Chris (our favorite favorite nurse) talked his Dr's into giving him phentonol again....they were leery because he was only on the cannula, but they tried it to see if his BP really was pain related, and indeed it was- he was back down with means in the low 70's.   Because of this he did have a couple apnic spells, but it was due to the meds....sometimes you just can't win, but have to pick the lesser of 2 evils.  He is doing well though, and got his first wubbanub, and is up to full feeds!  Chris was really letting me get hands on today, with diaper changes and what not, and then the night nurse let me lift Easton onto the scale....woo hoo! It was the second time I got to "hold" our babes!

And that sums up Easton's first week of life.....he's been a very busy boy already, and has gone through way too much for a brand new baby, but he's done wonderfully.  He is such a strong, determined, amazing little boy, but we already new that of him from the pregnancy.  I can not begin to tell you how each day just makes us prouder and happier....really it's the littlest things that can really make your heart melt, like holding his hand and having him squeeze it, him talking to you with his eyebrows....even though we can't snuggle our baby like we are both dying to, we are still connected...and waiting for that day when we get the go ahead to hold him soooo tight.