My Chunky Monkey

Look, I am sitting up all by myself!  YAY!  Even though it was just for about a minute, we a so proud!

I am so sorry that Scott and I have neglected the blog lately.  Truth be told, we have been enjoying our time together as a family, and we know that our loyal blog followers respect that and understand how LONG OVERDUE this is for us. 

Emma’s Progress:

Emma is WONDERFUL!  She is getting quite the personality.  She is smiling and “laughing” so much.  I put “laughing” in quotations because; she only makes noise part of the time.  She loves to be sung to, played with, read to, rocked, taken on stroller rides, and praised.  She gets so excited when she accomplishes a new goal.  And speaking of goals, she is meeting new ones everyday.  Her occupational therapist told us yesterday that we are going to have to set new goals for Emma because she has met all of her original ones.  Emma is: transferring objects from hand to hand, reaching up, out, up and across, rolling from her stomach to back, “almost” sitting on her own, grasping and holding on to objects for a long time, interacting with her surroundings, rolling to her sides, and on and on!  Everyone is very happy with her progress.  Emma is now 66 and 3/4 cm long and weighs 8.035Kg.  For those of you who have not been around these types of measurements, she is about 25 inches and 18 pounds! 

Doctors, Doctors, and More Doctors:

In the past few weeks we have seen: ophthalmology (eyes), nephrology (kidney), orthotics (helmet), cardiology (heart), pediatrician, and will be seeing neurology (brain) this next week.  Here is the short version of all of her appointments.  Ophthalmology: They still want to do tear duct probe and eye muscle surgery on the left eye.  Scott and I are not totally on board with the eye muscle surgery yet and are looking in to other options.  We know she needs the tear duct probed because we have been “working” on it basically since the day she was born and it is not much better.  Nephrology: We met with a new nephrologist at CMC and were quite impressed with her.  She took Emma off one of her meds because Emma’s urine was actually too alkalotic (not acidic enough).  We will be following up with her more post Glenn to watch out for kidney stones.  Orthotics: After being lied to about Emma’s helmet (don’t even get me started), this Mama got everything arranged.  We met this the helmet company and will be receiving Emma’s helmet next week.  This will help with her misshappened head and overall neck tightness.     Cardiology: Emma’s cardiologist is very happy with her progress.  He has been impressed to see how interactive she is becoming, how strong she is getting, and how good she looks.  He told us this week that she might be gaining too much weight…lol.  After being FTT (Failure to Thrive) for so long, we will take the major weight gain.  We do know via heart echo, that her shunt is getting smaller (this normally happens between 3-6 months of age), but we are monitoring her closely.  Hopefully we will not have to do the surgery sooner, but if we do, they are prepared.  Pediatrician: Cardioldy wanted us to see a general pediatrician.  We are seeing one, who is very nice.  She was also impressed to see how well Emma was doing considering all she has been through.  We were already caught up with our vaccines, so nothing new there.  Neurology: As many of you know, Emma is missing her corpus collosum, so we have a follow-up with neurology next week to check on Emma’s progress.  I think they will be pleased! 

In the Near Future:

Well, that about wraps up our recent events.  I can’t believe our little Princess is almost a year old.  I am busy planning her 1^st birthday.  Keep watching for details as we are planning a special “giving back” organization called Hope From Emma’s Heart.  We will be asking for everyone’s help to make this a success for babies with HLHS at Children’s Medical Center.  It will be an opportunity to show Emma every year on her birthday that giving is important as she has had so many people give to her. 

Prayer Requests:

Please pray for Emma’s upcoming surgery (August 22^nd)

Pray that the surgeons, doctors, nurses, etc. have the wisdom and knowledge to take care of Emma.

Pray that Emma’s post op is smooth and short.

Pray that Emma continues to develop, grow, and meet milestones.

Pray for all of our heart buddies.  Some of them really need our prayers.

Pray for Scott and I.  We know this next surgery is necessary, but are not looking forward to handing our baby over again.

God is good!  All the time!  God is good!

Much Love,

Emma’s Mommy (Sarah)

Emma and her future Father-in-law :)

Emma and her future Mother-in-law :)

Happy Fourth of July

Before Fireworks

During Fireworks

Red, White and Blue 

Aunt Stephanie and Soon to be Uncle Aaron!  

Play Time with Mommy!

Uncle Tom Tom getting some Emma Love

The What Ifs and Waiting Games....

Where do I begin……  So many things are going through my mind right now.  I have had some days lately where I have to remind myself to take a deep breath and smile.  Don’t get me wrong, I love being a mom to Emma.  She is beautiful, strong, brave, funny, and brings so much sunshine into my day.  However, we are under CONSTANT scrutiny.  If one lab is off, if her sats are a little lower, if she doesn’t gain weight one week, if her x-rays look off……then more tests have to be done and more ifs are added to the equation.  I think Scott and I would be lying if we said that this is easy.  It is NOT easy.  Sleep---what sleep??? ;)  Our days are so busy with therapies, medicines, treatments, etc.

 We are in a way, living on the edge right now.  Although her surgery is scheduled for August 22^nd, her oxygen saturations are what we are depending on.  If her oxygen saturations drop then surgery will have to come sooner.  Typically, the Glenn is done between 3-6 months of age.  They are “asking” Emma to wait until she is almost 11 months.  My “mommy gut” does not think that her shunt will last that long, but we will see.  Her oxygen saturation levels have been slowly trending down, so time will tell.   So, we are in the waiting game once again.

During this time, I am also trying to prepare for my PhD Quals and Scott is prepping for his Texas Pharmacy license test, so we are staying busy.    

Well, enough of the “what ifs” and negative attitudes.  I am sure that none of you want to read too much about that.  Instead, you are probably curious about our sweet little Emma and how much she is growing and changing.  I am more than happy to tell you all about it.    

Emma constantly amazes us.  She is full of so many smiles and laughs.  She loves interacting with us and is getting pretty spoiled rotten.  One of the cute little habits she has picked up happens during therapy time.  Whenever she does something really good and gets praised for it, she looks up at Scott and I and just smiles so big.  I guess she is as proud of herself as we are.  She is getting stronger and stronger everyday.  She can sit in her Bumbo chair for about 45 mins.  She can fully extend to reach whatever she wants.  She can pull, tug, push, etc.  Her range of motion is so much better as is her tolerance to tummy time.  She is still not putting much weight on her feet, but the therapist is not concerned with this right now. 

We are enjoying seeing her change a little everyday. And, her little smiles make it all worthwhile.  She weighs around 16 pounds!  She is my little chunky monkey!

*******Small Addendum:

            I was about to post this when I got a call that they wanted us to be admitted to the hospital to make sure that the recent (small) increase in oxygen wasn’t caused by anything major.  They ran many tests and did not discover anything big, so they sent us home on Friday. 

Prayer Requests:

1.     Please pray for Emma’s upcoming surgery. 

2.     Pray that Emma’s recovery will be smooth and short.

3.     Pray that Dr. Forbess and his team that they will have the wisdom and knowledge to perform the surgery at the right time.

4.     Pray that Emma’s saturation levels stay good until the surgery.

5.     Pray that Emma continues to develop and get stronger everyday.

6.     Pray for Emma’s heart buddies.  There are several of them that need extra prayers right now.

God is Good!  All the Time!  God is Good!  He gives us the strength to make it through these storms in life. 

Much Love and Thanks,

Sarah (Emma’s Mommy)  

Fun in the sun!

Oh no, We have been caught...;)

Small hospital stay!

Rise and Shine!