A New Love

I've added a few things to my "favorite things" list!! 

1)  Okay people - I used to make fun of the women who used these.  Seriously.  I thought these women were extremists who just wanted to look weird and show off.  UNTIL.... I had a baby that has to be held at all times (almost).  I try to cut her some slack because she went 3 weeks straight out of the womb where she wasn't held or touched.  She was sticked, prodded, probed, intubated, extubated, and attached to wires.  When Mati Claire was a baby, she would sit in a swing or chair or whatever for HOURS! Mattox was a hold-me baby...I tried a sling but never felt comfortable using it and I think he sensed that too.  He quickly got too big to use it anyway.  I didn't like the sling because I didn't feel the baby was secure and I still had to use my hands to support him at all times - which totally defeats the purpose, right?  So!  I bought a MOBY wrap! I figured what the heck.  I'll try anything if it makes her stop screaming.  It has a minimum weight of 8 lbs but I think we have all broken the "baby rules" at one time or another.  She loves it!  My love is your love.  Even if I look weird.  

Sorry its blurry - i am not a pro at figuring out the camera's timer.   And i have on no makeup so i tried to crop myself out of it as much a possible.  I can actually get stuff done being HANDS FREE!! 

2)  The Wubba-Nub.  I saw these in a store and passed over them.  First I can't stand the Soothie pacifiers.  But thats what she got used to in the NICU, and when there is a lack of comfort items around there, I couldn't bring myself to swap it out later.  My sister came to visit and brought me the Wubba-Nub giraffe.  Its awesome because you don't drop it as easily and you can wrap into the swaddle blanket!  No clips or sharp edges to worry about!  And in the middle of the night when you are scraping the sheets to find it for her (again, so she'll stop screaming) - its easily findable!  

3) Her O.  or her old-O.  No its not pretty.  No there's no bellybutton.  She has become even more aware of her surroundings and is beginning to interact more.  She started smiling and actually cooing.  [ah--- be still my heart].  If you talk to her enough, she will eventually smile and laugh at you. I went to tickle her belly for the first time without thinking and of course I came up short.  Afraid to hurt her belly.  I tickled her sides anyway and her ribs... and I thought to myself "who needs a bellybutton anyway?"  She's great the way she is and still laughs at you... you can tickle her feet or her neck!  It hurts as a mother because you want your child to be healthy and perfect as possible.  Its taken a long time to say "its ok."

4)  and last but not least.  These 3 are always at the top of my favorite things list:

Big/Lil Sis/Bro shirts made by Jennifer Townsend at Cotton.Patch.Kids on FB.  

And Big Girl News Today:  Merritt weighs 6 lbs 9 oz!!!!!!!!!  That is 1/2 lb this week = "a normal baby's" weight gain!  [Just fyi - week 5 she only gained 3 oz, 2 oz in week 6, and 8 oz this week!]  Go Merritt... its your 7 week birthday!

A New Normal

Well I have been spending A.LOT of time here:

Between waiting in the car rider line for an hour every morning and afternoon (and on first day it was 2 hours each way), PTO Fundraiser, and homeroom mom duties - I am trying to squeeze time in for my 2 year old and newborn on top of household chores!  Gigi left yesterday morning for good (*sniff*) and I'm learning to balance our new normal!! There have been so many changes in the past 2 months!  

I'm trying to find a new routine by adding Merritt's un-routine schedule to our mix.   She is doing better I guess.  She weighed 6 lbs. 3 oz the other day.  We started the Lasix and the only difference I can see is that maybe she does breathe slower (she originally breathed really fast pre and post surgery).  She has had a few spells where her face turns blue - which was not pleasant for either of us.  I think the doctor's goal is that if she can breathe slower and take the edge off her heart working so hard - she would feel better and eat more.  Not sure if its working, but all is well.  We are getting a second opinion but our pediatrician agreed with everything so far.  The new cardiologist, Dr.C, continues to disappoint me by rescheduling her next appt for another month away.  I thought he said he wanted to keep watch on her every 4 weeks?? I think she definitely has colic though.  She really likes to exercise her lungs around 9 pm for no reason at all other than to irritate me.  Her hernia looks bigger to me and Matt... hmm  :(  

Mattox's Mother's Day Out can not start soon enough.  He's going through terrible 2's, jealousy over new baby and lets-cling-on-to-mom's-leg-24/7 phase, getting his last 2 molars, and attempting to potty train.  Attempt being the key word.  No success yet.   But in his clingy-ness, he is still a sweetheart.  As much as I hate the fact that I can't move without stepping on him, I love that he's so lovable.  

Mati Claire is still sorting out some new Kindergarten issues, but doing well overall.  She had a few meltdowns over walking to her classroom by herself (it is an extremely long walk for them with the way they have traffic routed).  Just took a few days to get over that.   And she's just plain exhausted.  #mustgetinbedearlier!   She is missing Claire-bear tremendously.  She told me yesterday after I picked her up that she didn't have a best friend this year.  Breaks my heart.  She came home and drew a picture for me to mail to Claire.  :(    On the flip side - she LOVES Mrs. Landfair!! Today was their "Brown Day" and "Teddy Bear Day"  where they got to take their teddy-bears to school.  Oh how I love the kindergarten year! This year is going to be great!

And a footnote:  she is selling Entertainment books for her fundraiser this semester.  $30 for great coupons and discounts at restaurants and retail stores that we all go to!  Message me if interested!

O VSDPFOPDA?!?!?!

We had our follow-up appointments yesterday with cardiology and surgery.

The appointment with surgery went well.  Wasn't there 15 minutes.  Dr. Berch said her liver has definitely herniated through the muscle/fascia layer.  Not a problem.  He plans to fix it at age 1 (or even better 2 years old).  It could possibly be an out-patient surgery.  If we fixed it right now, it would just do it again.  The muscles are just not strong enough to hold it in and she is constantly going to the bathroom (like any newborn does) .. so the straining does not help matters.  We asked about wrapping her with ace bandage compression and he said that would not help at all.   I asked if this hernia is the cause of her pain that she seems to be in.  He said hernias in general do not hurt and he agreed that she has just had a rough beginning.  Hernias only hurt if they become incarcerated (meaning locked in place and not movable) and hers is not.  Good news is we don't have to see him again until August of 2013 unless something happens that we think warrants him looking at her again!  So surgery #2 is in the books for the future.  I love Dr. Berch and left the office with a smile and a good attitude towards the plan....

until I got to the cardiology department.

We knew before today that she has a small VSD, PFO, and PDA.  The PDA closed while she was in the NICU, and the PFO is not an issue.  For those of you who don't know, VSD stands for Ventricular Septal Defect.  Meaning there is a tiny hole between the two ventricles in her heart.

Merritt got a repeat EKG and echo.  I think she was having flashbacks of being in the NICU and was not a fan.  Our regular cardiologist, Dr. S, only sees neonates in utero and then passes them off after birth.  The new cardiologist, Dr. C, walks in and I spend more brain power trying to decipher his thick heavy foreign accent and ignoring his lack of a caring attitude and personality than actually listening to what he was saying.  After 2 1/2 hours all I heard was "...enlarged left side of heart... starting Lasix... early heart failure... congestive heart failure... possible surgery after 6 months of age... "   To hear your child is in heart failure may have been a phrase that is up there with "it may be livable or not livable."   Personally, I can't even begin to pronounce his last name and I don't think he took the omphalocele into consideration.  I think he looked at her strictly from a cardio perspective (doing his job I know).  Granted, this guy could be a complete brilliant cardiologist and just have no personality or bedside manner (like a few other doctors I've come across the past few months)... but I don't know for sure.  I got the feeling that he is jumping the gun a little bit by starting diuretics.  He said her weight gain was a huge indicator of her heart function.  Understandable.  Not gaining weight means her heart is not doing its job well and vice versa... but again, is he taking into consideration that her stomach is being pressed and she has "gut problems" (words from the pediatrician).   I left the office wanting a second opinion.  I was in shock because the VSD has never been a problem or caused a problem. It has always been on the back burner.  4 weeks ago everything was still fine with all things considered.  There is still a chance it can correct itself, but based on the fact that her heart is becoming enlarged, he thought she would probably need surgery later.  He was more concerned that the force of the blood leaking through the hole was causing tension/deterioration/pressure on her aorta.  The hole is directly below the aorta and is pulling on the aorta = not good.

Open.heart.surgery.  I was not prepared to hear that.  So surgery #3 is now lurking.  I was told by a fellow O (with a VSD) mom that a VSD would be the problem of choice in heart defects because it is fixable.  Good to know I guess.

Add ALL of that on top of Mati Claire getting sedated for a dental appointment today, starting Kindergarten, Mattox getting his last 2 molars, all of us adjusting to a new school routine morning, and Merritt just being Merritt (fussy and doesn't sleep).  I.am.exhausted.  I think I need drugs ;)  If you run into me in public - please disregard anything I say that doesn't make sense.

So who has experience with fixing aVSD in an O baby?  Anyone? Anyone? ;)

1 month old!

There were times that I did not think I would see this day! Merritt is 1 month old today!  She weighs every bit of 5 lbs. 13 oz today.  We were really hoping to see 6 lbs but she's s.l.o.w.l.y. getting there.  Dr. Russell (our pediatrician) said he was happy with 1/2 -1 ounce gain per day.  And she's been doing that (been out of the NICU for 12 days and she's gained 7 ounces since that day).  

She's fussy most of the time.  At first I thought it was colic (like Mattox) but it didn't exactly fit that bill. I'm worried that its something more serious and I'm letting it go -- but surgery has assured us that "everything is where it should be... its just a tight fit."  The neonatologist said it was probably a combination of pressure on every organ from the O on top of being a typical newborn.  She is going to the bathroom constantly and all of her vital signs are good... hopefully she will grow out of it soon!  She doesn't seem to have any reflux - just normal baby spit up.  Ha! I actually used the word normal in reference to her!  shocking.  One of the doctors asked me, "You are an experienced mother, what do you think is wrong with her?"  lol! Experienced!  w.h.a.t.e.v.e.r.  I have NO experience when it comes to this baby!  I feel like I'm swimming in the deep end without a life preserver barely holding my head above water.  Anyway, we have an inside joke now that I'm an "experienced" mother.   (far from it.)  I need one of those "What To Expect When You're Expecting... With An Omphalocele Baby" books! 

When she's not screaming, she is very active!  As in utero too.  Constantly kicking and moving her arms and legs.  Doesn't sleep very well yet.  Her abdominal pains seem to wake her up every few minutes.  Bless her heart.  Unfortunately the baby gets away with more than the older ones.  My other 2 NEVER got to sleep in my bed with me.  Yes, I'm mean like that.  Why start a bad habit? But Merritt breaks every mold.  

Not comparing because she is definitely her Own person, but she is the spitting image of Mati Claire at that age.  Insane hair and all.  At least I know what's ahead in that department.  But she reminds me alot of the way Mattox acts.  They have similar personalities (to me).  

Many people have asked about what her incision looks like now.  See below!  Her diaper got caught in her stitches so the white fuzz towards the bottom is diaper that we had to cut off from her... but its stuck and can't pull it out without pulling a stitch.  

""For the mountains shall depart and the hills be removed, but my kindness shall not depart from you, nor shall my covenant of peace be removed," says the LORD, who has mercy on you."  Isaiah 54:10

Its amazing that 1 month out...and I feel like we are on the other side of that mountain now.  That's a whole 'nother post though. 

We call them chicken legs!

Dumplin' wasn't exactly feeling the love today taking pics... but this is as good as it got. 

Her incision at 1 month.  That would be her liver you see bulging... it is mostly flat when she's resting.... but... 

When she starts screaming it REALLY bulges out.  Surgeon said IF it was herniated after surgery he would not fix it anytime soon though.  We can live with this :)

I am constantly reminding myself to be thankful for where we are.  And in everything give praise to God! It can always be worse, and she is still a miracle!!!  I have to accept that she probably won't ever be considered "normal" and she never has been.  

A Clinton Arrow

I am such a traitor.  I officially have a Clinton Arrow.  One of my Vicksburg High school enemies.  Won't say arch-nemesis (Warren Central) but Clinton came in close second.  Regardless, we love Clinton and couldn't be happier with their school system right now.  Mati Claire is a KINDERGARTNER! We met her teacher this morning and we are excited!  MC's biggest fear is getting lost in the building.... I don't blame her - it is a pretty big building.  Here's a few pics:

Excited about being in Mrs. Landfair's class!

"The RED hall"

Stay tuned tomorrow for dumplin's BIG 1 month old (at-home) pictures! and an update on her!

Just for laughs

Of course its blurry - because he is in constant motion.  He's a little obsessed with my milk at the moment... and all things related.  

Merritt had an unofficial weight check yesterday.  With a onesie and wet diaper, she weighed 5#12oz, so the nurse said she would document 5#10oz for the diaper.  We have our official weigh-in tomorrow where they will strip her down.  But regardless, it was up - which is all the docs want to see.  She is pretty fussy most of the time.  At first I thought it was colic (Mattox was extremely fussy til around 3 months old), but her neonatologist reminded me that it was probably O related.  All the pressure on every organ is making her stomach hurt.  Usually after filling her diaper up, she is okay, but it seems she is constantly working on her diaper.  Gotta love newborns!  She also still likes to be held ALOT... again, reminds me of Mattox.  But hallelujah!--she likes the swing!  To me, she looks like Mati Claire but acts more like Mattox! lol!   Anyway, we are getting little to NO sleep around here.  And Kindergarten is starting for Mati Claire in just a few days!  Whew!  Between her school stuff (and I joined PTO), Merritt's doctors appointments, Matt going back to work, and Mattox -- well, just being Mattox -- I am exhausted just looking at the month of August.  Luckily mom is here for a little bit longer to help me get settled!

Here's to our "new normal" that I prayed for for so many months.  It came a little quicker than I imagined.  But it just goes to show you God answers prayers! in His timing.  I still stand amazed and completely changed.  

"I will dwell in them and walk among them.  I will be their God, and they shall be My people." 2 Corinthians 6:16