There She Goes! (& Merritt Update)

Mitt is M-O-B-I-L-E now!!!!!  She doesn't do the "normal" crawl, but does what I call the "butt-scoot."  Anyone know what I'm talking about?  I would upload a video, but Blogger hates me when I try to do that.  I was so excited today when I couldn't find her!  I put her in the living room and a few seconds later she was nowhere to be found - snuck around the corner following her big bro into the dining room!  Yay!!  

Cardiology Update:  Her heart is pretty much the same overall.  (Backstory - the first 2 of 3 holes in her heart closed in the NICU, but we have been following her VSD).  The VSD is ALMOST closed.  Usually, the smaller the hole the louder the sound - but our new fave cardiologist said that wasn't even the case for her!  In her case, it was so small he could barely hear it.  The echo showed the tissue almost covering the hole (it has slowly moved down).  Bottom line is that he thinks it will eventually close on its own without ever having any surgery!!!  Praise God, the almighty Healer!  It gives me chills to think she could have had open heart surgery at 6 months old if we hadn't decided to get a second opinion!  If anyone ever needs a pediatric cardiologist in the Jackson area - I can highly recommend one!

Pediatric Update:  We had our 1 year checkup with Dr. "Whistle" the other day.  I love him too.  I had fully prepared myself to hear a lecture about fattening her up, push the physical aspects, push the areas that she's behind in.... but nope!  I got the "keep doing what you're doing!"  what a relief!  She does have constipation issues which is normal for O babies --- but other than that she's great!  Weighed 15 pounds 12 oz with clothes on = not on the growth chart at all (or less than 2% I think he said).  Was 29" long which is in the 50% and head circum. was in the 25%.    So tall but skinny!  lol!  sums up most of our family regardless of any O! ;)

Weaning Update:  ok this is not going well.  for either of us.  but it's going.  I've never had to actually wean a baby before.  My other 2 babies "quit me"  around 11 months but I had pumped so much extra milk that I used that to get me over the 1 year mark with both.  Merritt on the other hand HATES the bottle!  I have been slowly introducing whole milk over the past month and mixing it with breastmilk I pumped while she was in the NICU.  she would rather starve and hold out for the real thing and skip the bottles!  crazy child.  I'm not one of those moms willing to breastfeed til they start Kindergarten.  Plus Mitt is a biter.  I'm over it.  Lets move on to the next phase please.  

Pacifier Update:  yes, theres an update on that too.  I pulled the plug cold turkey on my other 2 at 13 months of age.  Hmmmm........there seems to be a window of opportunity I see the past 2 days where she has not used it.  Do I go ahead and pull the plug knowing she will have surgery next year and needs "more comfort" than a "normal" child - or do I treat her as normal as I would my other two? 

Nursery Room Update:  yes, things are crazy here, right?  We moved her crib into her real room this past weekend.  Her crib had been in our room since we didn't know how we would be bringing her home from the hospital (tubes, trach, dressing changes, etc.)  On an average night this past year, she would start out in her crib ---> sleep ~2-4 hours ---> wake/eat ----> depending on my mood and our level of alertness she would usually end up in my bed.  Now that she is quite mobile it is difficult to sleep with her.  So I began the "let her cry it out" method last night.  Usually I hear her stomach growl in the middle of the night - and with a baby that has weight issues - I couldn't knowingly ignore that...... until now!  

Surgery Update:  we have another appointment with the surgeon in August.

So LOTS of changes around here!  

8 months and Cardio update

Punky is 8 months old! She weighs exactly 13 lbs. (which I think is starting to feel a little heavy - ha! maybe I should up the Jillian workouts).  I call her Punky sometimes... because she's just got that Punky Brewster attitude to me.  Or something about her just reminds me of the word spunky.  She's got spunk.   She's got attitude.  She's got drama.  Ain't nobody gonna ignore her!  ;)  (i don't use double negatives for those of you who don't know me...just a little southern talk there.)  She's a fighter, not a lover!  (I kid - sort of)

Her belly looks the same overall.  We have been using a scar cream for the past month and it has dramatically decreased the redness and definitely made it smoother.  We have an appt later this week with our surgeon (who moved to Baptist - so we are TOTALLY done with UMC now and I couldn't be happier about that!) - but we already know he is tentatively planning to do her next surgery for her "secondary hernia" after she's 1. We would like for her to be walking because her ab muscles will be in better shape for recovery.  And she's more likely to "bounce back" if walking is normal for her.  

It's been 4 months since we saw the cardiologist last.  Dr. Braden at Baptist is awesome!  To sum up:  she originally had 3 holes in her heart (1 being the bigger problem aka VSD).  At the last appt, we thought the 2 smaller ones had closed.  One of them is not actually closed, but they can only see it when she cries.  So it's not technically closed, but extremely small.  The VSD is smaller again, but still there.  He said "it can't get any smaller without closing."  So we will recheck in 4 months again, and if its still the same he will let us go an entire year before rechecking it.   So overall, it was pretty much the same as last time, and we're ok with that!  It was all good.   And to think if we had stuck with the other cardiologist - she would have had major open heart surgery by now!! And obviously she did not need that ---> she's doing fine!  She is not on any medication and hasn't turned blue (that I know of) in months.  She does breathe faster than a normal baby and I'm hoping that will slow down when the holes close.  We'll see...

The 8 month update: 

• Weighs 13 lbs
• Wears size 1 diaper (although I think we're moving up in the near future)
• Wears 3-6 mo/some 6 month size clothes
• Sleeps a maximum of 4 hours at a time (day or night).
• Got her first two bottom teeth in the last week!  oh they are precious. 
• BUT...has started biting mommy while breastfeeding.  momma don't play like that. :/
• Still not sitting up on her own, but can balance a little if holding onto something or if something is around her waist.  Usually takes a nose-dive after a few seconds. 
• The H.A.I.R is coming in....nuff said for now.  

Size Matters

Ha! Got your attention, didn't I?  ;)

I had written a rather lengthly post venting about how strangers react to her and my reaction to them.  I'd rather share good news, so I won't post that one.  Just know that the thought of lying to you for multiple reasons runs through my mind if you ask me how old she is.  And yes I do realize that she is small.   If you can't say anything nice, its best to leave this mama bear alone and not say anything at all.  moving on...

Merritt is 12 weeks/3 months old!!!  She weighs 8 lbs!!!!!!!!  whohoo!  She is still wearing newborn-size clothes and doesn't sleep more than 4 hours generally.

We had her cardiology appointment with the new cardiologist (Dr. Braden) today.  And it was SO worth getting a second opinion.  What a difference a nice informative doctor can make!  She still has a PFO and VSD that have not closed yet (see links for definitions).  However, the PFO was so small the sonographer could barely see it.  The VSD is getting smaller!!  Dr. B said there is a thin membrane above the hole and he is VERY optimistic that it will close on its own eventually.  He has seen some close as late as 1-5 years old.  The best part?  He did not see a reason to do surgery anytime soon.  IF it doesn't close later and IF it is still causing a problem later, he could see the possibility.  Those are 2 big IF's though.  We are keeping her Lasix dosage the same and she should out-grow all of this!  The left side of her heart was still enlarged but he thought it was in the process of shrinking back to normal size, and she still had a little pulmonary stenosis but he thought that was due to the fact that the VSD is getting smaller so naturally there is more blood elsewhere.  That's a good thing.

We have come full circle and we are finally back at Baptist Hospital where we began exactly 1 year ago.  Its nice.  Dr. Braden's office even had an electric warming blanket for the babies.  Yeah we're spoiled like that!  So Merritt is good for another 6 weeks til the next checkup.

Her 0-3 month sized pants that are HUGE on her

I'm sure we'll be seeing alot of this office in the future

My lil cutie patootie!  

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? ;)