Hope From Emma's Heart: An Organization to Honor HLHS Babies

Hope From Emma’s Heart

Family, Friends, & Prayer Warriors:

We have been truly blessed to have so many wonderful family and friends supporting us every step of the way of Emma’s journey.  Whether we needed food, laundry done, supplies, bows J, encouragement, or especially prayers, you all were there.  However, there are many families that do not have that support.

We would like to begin early with Emma in teaching her how to give to those in need, so we are starting an organization called: Hope From Emma’s Heart.  This organization will collect items to put in care packages for babies in the Cardiac Intensive Care Unit in Dallas with Hypoplastic Left Heart Syndrome. 

How can you help?  We will be collecting the following items to put in care packages for the HLHS babies.  All items must be new!

1.    Blankets (receiving) for boys and girls

2.   Newborn socks for boys and girls

3.   Johnson & Johnson Baby Bedtime Lotion and Body Wash (15 fl oz)

4.   Wash cloths for boys and girls

5.   Pink or blue gift bags (medium size)

6.   Pink or blue baby mittens

OR

7.   Walmart or Target Gift Cards

OR

8.   Money for special bows/headbands for the little girls and caps for the little boys       

that we are having made!  (We are going to have special bows made for the girls and caps made for the boys, so if you want to help with this then monetary donation would be the best route)

Each care package will include a special note about Emma and the love and support we have been shown.  We pray that this little package will be uplifting to the families as they go through the journey of mending their baby’s heart. 

If you would like to help it would be greatly appreciated.  This would be a great service-learning project for a school or business organizations J.  We will deliver the packages to Children’s Medical Center around Emma’s first birthday (October 4^th).  I have a goal of 15 packages for girls and 15 packages for boys!  I have no doubt that our wonderful family and friends will help make this possible. 

Address to send monetary gifts or package items:

Sarah Stewart

13710 CR 3660

Allen, Ok 74825

If your school or business organization would like to collect items, we could possibly arrange a pick-up in or around Ada, Oklahoma City, or Dallas.

Thank you again,

Scott, Sarah, and Emma Stewart

We have been so blessed!  Please consider helping us shower other families with blessings to help celebrate Emma’s first birthday.

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!

The Latest News

So Sarah and I were talking tonight and both came to the realization that neither one of us had updated the blog in a while with all the latest news on Emma.  So here it goes.  Emma is back at home again.  She went into her cath procedure on the 27th to find out more information as to what our plan would be for the future (whether we would go Glenn Procedure or heart transplant.)  Sarah and I were really worried because we knew the cath would be long and she would have to be reintubated (breathing tube put in) to do the procedure.  As many of you are aware, it was such a struggle getting her off of it the first time that we were very scared and worried about her having to have it again and then her being able to come off of it.  Also, we were concerned with how long she would have it if she could not come off.  So, she went into the cath procedure on the 27th of May at around 7:30am and did not get done till around 1 pm.  So she was in the procedure for over 5 hours.  A very long cath procedure but Dr. Nugent had a lot to do when he was preforming it.  While he was in there, he ballooned open the stent in her left pulmonary artery bigger to make it anatomically more  like her right pulmonary artery.  If you remember, this left pulmonary artery was very small in comparison to her right pulmonary artery until he put a stent in it.  It was very very tricky to put a stent in the first time because he was unable to use a guide to put the stent in.  Without a guide, he basically had to manipulate the stent by hand which can be very hard to do.  The reason he could not use a guide is because Emma would go into something called heart block every time he would slide the guide through her Sano shunt (which is the initial connection made during the Norwood to enable blood to flow to her lungs to be oxygenated).  Nevertheless, as good as Dr. Nugent is, he successfully put the stent in the first time and she benefited greatly from that.  This time, his focus was to enlarge it to make it even closer in size comparison to her right pulmonary artery.  This took some time as again, when he would pass through her Sano and start to balloon the stent (make it bigger), she would go into heart block.  He said she went in and out of it around six times or so when she was in there.  (Very scary for us to hear by the way!!)  But, he was able to get it closer in size, which was really good!  Some of the other things that he did when he was in there was evaluate her pulmonary veins to look for any stenosis (narrowing/closer/obstruction), assess the function of the heart, take measurements of pressures while he was in the heart, and many more things.  So the results, everything looked really good.  Better than I think any of us expected! (Praise God!)  And they think that right now, she is back on the path of being a Glenn candidate!!!!!!  Now in saying this, we know that there are chances that this will not be a straight forward in and out Glenn like many other hypoplastic left heart infants go through.  Emma still has some things that could make her recovery time longer than normal.  But, the fact that we are doing this procedure is an answered prayer from God!  So, when?  Well it will probably be in a few months.  As for right now, Dr. Forbess sent us home on oxygen to aid in her recovery and put her in better shape for the Glenn.  But it will more than likely be in a few months.  There is really no set date because it all depends on how miss Em is doing.  So in the mean time, while we are waiting, we are just enjoying being home with our sweet little princess and trying to get her caught up on all the things that she is behind in.  Being intubated for as long as she was made her developmentally behind as many could imagine it would.  Emma, when she was extubated would have been on the same level at 6 months as more than likely a 2 month old.  Does she roll over yet, not yet (well she will roll over sometimes from tummy to back if really mad).  Does she stand up with support yet, not yet (just like rolling over, she will put weight on her legs only when really mad).  Does she eat from a spoon, not yet.  Does she do many things an 8 month old should do, not yet.  But, she is here and that's what matters.  You know when I thought about her being that far behind it almost seemed like an ominous task to get her caught up.  But we are trying our very best daily to work with her and make her do more things like an 8 month old should be able to do.  But, in the great scheme of things, being a little behind because she was intubated, and in the hospital, while going through surgeries and many other painful events, pales in comparison to her being here.  We are truly blessed to have had this time with our child that would have been stripped from us if it wasn't for God and Him working though the great people at Childrens!  We look forward to the day when we can show Emma her journey, the ups and downs, the scary times, the happy times.  And we look forward to her being able to share what all amazing things God and so many people have done for her in her life!!

We don't know what the future will bring, and that is scary.  But we look back at all that we have gone through and we see how amazingly strong Emma has been.  As I have said to many people before, Emma has taught me more in the time she has been here than I would have ever learned on my own.  Lessons about the truly important things in life and the blessings that I would so often overlook.  Thanks be to God for watching over her and us through all of this!

A very special thanks to all the doctors, nurses, respiratory therapists, etc. at Childrens for watching over Emma with such care and expertise, over the time we have been there!  You are all truly amazing!

So, until we go in for the next surgery, we are here in Dallas, playing with Emma, laughing, having somewhat of a "normal" life.  We will try to get on as often as we can and update with pics and videos of Miss Em (Our Precious Princess) and her hilarious things she does and the progress that she is making. 

Some prayer requests:
1)  Pray for her next surgery.  That it is a success and her post op goes very smoothly!
2)  Pray for the doctors, nurses, and all the staff at Childrens. 
3)  Pray for Emma to continue to make progress in her development and to do better each day at home.
4)  Pray for Sarah and I to continue have strength for the road ahead.

Thank you all for the prayers, thoughts, and help you have all been!  I hope you all know how much of a blessing you have all been to us through all of this!

Daddy Scott

Emma getting ready to go to the cath lab.

Mommy and Emma in recliner after cath and recovering on 8th floor.

Look at that big girl sitting in her Bumbo.  And, oh yes, she is watching Baby Einstein. :)

Emma going home after being in hospital from cath procedure.

Emma chilling at home in her activity center.

We might skip needed development and go straight to reading! ;)

 

Me and my sweet Princess outside.

Emma outside by flowers at hospital.

Sweet little Princess!! :)

An Update on Miss Emma and Future Events

Well hello to everyone!  Just wanted to give a quick update on how Emma is doing and also on some soon to be events in the near future.  Emma is doing amazingly well at home!  This week, Sarah and I took a vacation/work related conference to Las Vegas and Gramma (Sharon) watched after her.  It was very hard leaving her but was good for us.  A special thanks to her and all those that came down to be with them and help take care of Emma.  She did well the days we were gone and greeted us the night we got in with snores as she slept soundly.  The next day, however, was full of smiles as she saw that we were back home.  I got to watch her yesterday while Sarah went to something she had planned, and let me just say, I think that Gramma may have done a little spoiling while we were gone!  ;-)  She is still developing that little personality of hers.  As I was watching her, I turned around for about 5 seconds, and when I had looked back, there she was, with NG tube in hand.  She had decided to completely remove it!  And as I said, "Emma, well now why did you pull that out," she just looked at me and smiled.  Ornery little thing :-)

Well we are about to head in tomorrow to the hospital as we prepare for our cath procedure on Friday.  You may be thinking, "Well why in the world do they need to go in Sunday if the procedure is Friday."  It is only because she is on a medication that they are wanting to ween off before the cath.  This way, it will not make the cath procedure have false reading.  So we go in tomorrow sometime and get settled in for a week (or more) back in the hospital.  Please pray that her cath procedure goes very well on Friday and that we will have some sort of clearer direction for Emma's future plans.

I would like to extend a continued thank you to all of you that continue to pray for Emma and us!  As you can see, those prayers are working!

God is good, all the time.  And all the time, God is good!

Specific Prayer Requests:
1)  Pray for Emma's upcoming cath procedure on Friday.
2)  Pray that the doctors will know which way to go that will be best for Emma.
3)  Pray for all the medical staff that will be taking care of Emma this week.
4)  Continue to keep Sarah and me and our families in your prayers.

Be sure to check out the latest youtube video if I can get it loaded!

Daddy Scott

Mother's Day

Wow, what a Mother's Day!  I am so blessed to be the mother of Emma!  Emma has changed my life in so many ways!  Becoming a Mother changes anyone's life, but becoming a mother to a child with a CHD really changes your life.  That moment where you get to hold your baby for the first time happened for me when Emma was 21 days old.  The first time I heard her cry---5 months old.  The first time to pick her up by myself---5 months old. Her coming home outfit---size 6-9 months because she was six months old before she got to leave the hospital.  We start our morning off with a smile and 10 meds!  I have several charts up in the house just to keep track of her meds, ins and outs, PT/OT/ST, doctor appointments, etc.  They have called me in twice to tell me that my daughter is crashing-----However, at the end of it all, she is HERE!  God has given me 7 months with this sweet little girl.  Yes, we have a long ways to go, but we have come so far!

I got to spend Mother's Day with my Mom, Dad, Scott, Emma, My bother, My Sister-in-law, and Coen!  My Wonderful husband wrote me a beautiful poem for Mother's Day that I want to share with you!  Scott is an amazing husband and father and he went out of his way to make me feel special on this day!

Poem by Scott:

I look before me and I see,

Our child's amazing mother, and hey, she is married to me!

She loves our child with all of her heart,

And she has from the very start.

She makes mothering our child a priority in life.

Even though, at times, it is filled with some strife.

She drys up the vomit, and cleans off the poo,

And she turns and says to me, "Well that's just what mother's do!"

She gives our child baths and changes her clothes,

she even uses the electronic sucker to clean out our child's nose.

She cleans he house and even cooks the meals,

I don't tell her this enough, but she's kind of a big deal!

She wahes the dishes, and cleans off the table,

Even when Emma is across the room screaming, and she may not feel able.

She deals with all aspects of our child's care,

Which keeps her so busy she might not be able to fix her hair.

She gets ready the feeds, and preparess the swing,

Puts on Baby Einstein, while in the background the phone begins to ring.

Oh there are so many many more things that I could list out,

That would give you a better idea of what her life as our child's mother is all about.

But one phrase is for sure, one statement that trumps all other,

"I have the best wife, and our child has the best mother!"

Pics from Mother's Day!

(Having issues with pictures...Will upload soon)

Future Plans:

Emma will go to the hospital on the 22nd to spend a week before her next heart Cath!  The next heart Cath is on the 27th and will look at the current function of her heart.  This will give the doctors an idea of where to go from here!

Prayer Requests:

That Emma will continue to gain weight and grow!

That Emma will be able to stay off of oxygen!

That Emma will stay infection and virus free!

That Emma's Cath will go well and the doctor's will be able to make a good/informed decision for Emma's next step!

That Emma will have a short and uneventful recovery from the Cath!

That Emma will continue to improve with her physical development!

That Scott and I will have the knowledge/patience/strength to take care of Emma!

Please pray for Emma's heart buddies!

God is Good!  All the Time!  God is Good!

Sarah (Emma's Mommy)

WE ARE HOME!!!

To our Loyal Blog Followers,

I am so sorry that we have not updated the blog in so long.  It has been an extremely busy, yet eventful few weeks.  I would write a lengthy, detailed summary about what has gone on, but instead I will hit the highlights in a list.

Emma was doing SOOOO well that she got to move to the 8th floor!  This is the Cardiac floor you go to, to get ready to go home!   

Emma is not requiring any oxygen support:

Emma is feeding into her stomach with breast milk!  She is also doing bolus feeding!

She had her first Easter and got to spend it with cousin Coen!  She also got to dye eggs and hunt Easter eggs!

Emma got to come HOME (well, our Dallas home)

First car ride!

I pulled my NG out on my car ride home!

Emma will go back at the end of May for a Cath procedure to evaluate her heart again!  The doctors will then decide what the next step in her plan will be!

PLEASE REMEMBER:  Emma still needs to stay INFECTION FREE, so we will not be getting her out much and request that you do not come if you are sick, have been around sick people, etc.  Also, Scott and I are trying to get used to this new lifestyle, so if we do not return phone calls, messages, etc. please know that we are trying our best! 

Prayer Requests:

 That Emma will continue to gain weight and grow!

That Emma will be able to stay off of oxygen!

That Emma will stay infection and virus free!

That Emma's Cath will go well and the doctor's will be able to make a good/informed decision for Emma's next step!

That Emma will have a short and uneventful recovery from the Cath!

That Emma will continue to improve with her physical development!

That Scott and I will have the knowledge/patience/strength to take care of Emma!

Please pray for Emma's heart buddies!

God is Good!  All the Time!  God is Good!

Sarah (Emma's Mommy)