Tuesday, December 30, 2014

Trending in a Better Direction

These two = ❤️😃. Emma's labs look so much better today and her Xray is stable.  We still have a few things to tweak as they have her fluid restricted and are just starting back some meds, but we pray we are moving in the right direction.  She even ate her lunch...no tube feed needed!     Emma and daddy are enjoying a nap! One day at a time!  God is good!

Monday, December 29, 2014

Electrolyte issues

This sweet girl is smiling through some rough times right now.  Emma's electrolytes are out of whack and some are critically low and  continue to drop despite supplementation.  Her low electrolytes also make her feel crummy...plus, the supplements hurt her stomach.  So, we have put in a new IV, stopped diuretics, and upped IV and PO supplements. We are in a tough spot because Emma can't afford to lose anymore electrolytes, but historically, she requires diuretics.  We are asking for prayers that they can get her normalized without her reaccumulating fluid in her lungs.  

Sunday, December 28, 2014

More ups and downs

Sorry for the delay in updating our wonderful blog followers.  Life in Boston has had its ups and downs over the past couple of days. The day after we discovered some excess fluid on Emma's lungs, we upped her diuretics and took her back off of the oxygen.  We also "gently forced" our stubborn daughter to start eating.  Emma has never really tolerated formula feeds very well and this time was no exception.  Emma's stomach was so full of gas it literally looked like it could pop.  However, as we came down on the formula, and up on the puréed foods Emma's stomach came back down to her baseline.  Everyone was thrilled with her quick turn around and once again started discussing discharge after an xray and labs on Sunday. 

Yesterday started off as a fairly good day for Emma.  We worked her back to her normal water times through her tube, and once again got her to eat all of her meals.  However, Emma did not really want to eat her supper and kept trying to gag herself.  We managed to get supper finished, played, gave her a bath, and tucked her in for the night.  About an hour after bedtime, Emma woke up retching and gagging.  She never vomited, but did so much retching and gagging that her O2 levels dropped and had a hard time coming up.  We are not sure exactly what happened....she could've aspirated a little while gagging so much...who knows.  Anyway, Scott and I have taken turns tonight keeping a close eye on her. Her oxygen levels have not been as high tonight as they were last night, but she has not needed oxygen so that is a positive thing. 

Having a heart "baby" is never cut and dry.  There are so many factors that play a role in her overall health.  Emma is constantly throwing us curveballs when we think we finally have the right regimen to send her home.  Emma will get an xray and labs done this morning.  We should then have a better idea of what the next few days hold. 

If you don't hear from us on the blog, please know that things are probably status quo.  Scott and I are taking turns sleeping, so most days are a little crazy.  For instance, yesterday, Scott slept at the hotel from 2-9pm, came back to the hospital and then I slept from midnight to 7am.  So, we are doing our best to keep Miss Priss entertained while squeezing in some much needed rest..lol.

Specific Prayer Requests:

1. That Emma will continue eating and not be so stressed.

2. That Emma's labs and xray will look good today.

3. That Emma will be able to have good O2 levels without oxygen.

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

Thank you for the continued prayers and support.  We also want to thank all of you who have sent cards, gifts, and most importantly prayers our way.  We are truly blessed by all of our loving friends and family.

Friday, December 26, 2014

A little more time

Well, in true Emma fashion, we will more than likely not be discharged from the hospital today.  Emma's Sats dropped over night and she was breathing faster.  Her X-ray showed more fluid on the left side, so we are going up on her diuretics and putting her on supplemental oxygen for the time being. 

We want her to be in top top shape when we leave, so we don't consider this a huge set-back, just that Emma needs some tweaking before we can leave.  Prayers for a clear X-ray and the ability to come off of oxygen are appreciated.  Scott Stewart

Wednesday, December 24, 2014

Twas the Night Before Christmas

Well, it looks like we will be discharged from the hospital on Friday. We are excited and nervous all rolled up into one big ball of emotions.  Emma is doing well, but still has a ways to go before being back to baseline.  

One area that has really caused us issues during this trip is Emma's fear and anxiety.  Emma has never been afraid of nurses, doctors, other staff, and/or medical testing.  This go around, Emma has been off the charts anxious and angry. Emma yells and cries when anyone walks in her room, she throws things at people, and is chewing her fingers raw. 😞.  It breaks our hearts to see her this way.  We work hard to get smilies.  Due to this anxiety, Emma is controlling areas of her life that she has control over...eating and participating in activities.

We had a fairly quiet day today and enjoyed the less "assessment" times.  We had a lovely family (who we met here...the mom is originally from Sulphur Oklahoma) bring us a delicious Christmas Eve dinner and precious gifts. We are so thankful for these families kindness and caring hearts. Their precious little heart hero is super adorable. 

Enjoy our version of "'Twas the Night Before Christmas"

Twice the night before Christmas when all through the hospital room. Every nurse was stirring constantly in and out of her room.

Stockings weren't hung because there's no chimney there but we hope that St. Nicholas finds a way there.

Emma Is nestled all snug in her hospital bed with visions of Ativan and Motrin dancing in her head.

With Mom and her blanket and Dad in his cap...
Due to hospital rules, only one of us is settling down for a short winters nap.

When up on the monitor there arose such a clatter. 
I sprang from my chair bed to see what was the matter.

 Away to her bed I flew like a flash.  Watching her monitors in my mad dash.

The nurse was attempting to get some vitals on her.
So the blood pressure cuff had caused her to stir.

As we heard her scream as she drove her nurse out of sight.
Merry Christmas to all now get out of my room tonight.

 Thank you again for the prayers and support.  Merry Christmas from our family to yours.  Enjoy your day and remember those spending their holiday in the hospital and those taking care of them. 

Tuesday, December 23, 2014

Echo Update

I know so many of you have been waiting on the results from today......Emma's echo looked great.  Her function was good, pulmonary veins open, atrial septum open!  To God be the glory!  Bigger update tomorrow.  

Prayer Request

This crazy hairdo kiddo will be going down for a sedated echo, broviac removal, and in and out Cath to check for UTI.  Prayers for the RV function to look good, pulmonary veins open, and atrial septum open.  God is Good! ❤️

Sunday, December 21, 2014

Two Down....One to Go

Well, Emma got two of her chest tubes out this evening so I finally got to hold and snuggle her more. Praying her X-ray/respiratory status look good in the morning.

Princess Cart Parade

Emma in her princess cart headed to X-ray!  Really hoping to get some chest tubes out today.  

Saturday, December 20, 2014

Update for 12/20/14

So Emma had a good day.  It seems to Sarah and I that each day she is getting stronger and is becoming more comfortable.  The big thing for today was the clamping of one of her chest tubes that has been draining the majority of fluid.  I caught her surgeon in the hall this morning (I am not sure if he was on his way to see us) but he walked with me all the way down to her room.  He listened to his fellow reading off the numbers of drainage but then looked at us and asked, how do you think she is.  It's amazing having someone with such a great amount of education and experience, willing to come down and take time out of his, no doubt hectic day, to see, number 1, how Emma is doing, and number 2, is willing to listen to our input.  What a blessing! We ended up making a plan to attempt to clamp the chest tube draining the most volume and see how she did.  In theory, if she does well with this and tolerates any fluid that accumulates, the chest tubes can come out.  So we are praying this is the case as these tubes cannot be comfortable for her to have to deal with everyday.  We have increased how much nutrition she is getting as well, and she seems to be tolerating it well.  All in all, it was a good day, filled with lots of smiles, laughs, naps, and some, I mean many, sassy moments.  As I type this, our sweet little girl is sleeping soundly in her bed. :) God is good, all the time.  And all the time, God is good!

Prayer Requests:
1) Pray her respiratory status stays stable with this chest tube clamped, and that we can get the chest tubes out soon.
2) Pray she continues to tolerate increases on her nutrition, and pray that she has a desire to start taking food by mouth again.
3) Pray that she is as comfortable as she can be with everything going on, not too stressed.
4) Continue to pray for all the people that have a role in her care.  They have helped her out in so many ways and we are so very thankful to God for each and every one of them.
5) Pray for Sarah and me, for the strength that we continue to need.

Thank you all for the thoughts and prayers!


Thursday, December 18, 2014

One week postop

As I lay here next to my sweet girl, I cannot believe that it has been a week since her life saving open heart surgery. Her postop recovery has been remarkably smooth. While there have been various hiccups along the way, including the massive chest bleed, Emma has recovered from this extensive surgery very well. I am once again in awe of our God's amazing Love for our family. 

We still have a little ways to go to get Emma closer to baseline. She still has three chest tubes in that we are hoping to get two of those removed today. However, Emma has been off of oxygen since  around four this morning and is doing well. This is a huge blessing. We have a ways to go on her eating, physical activity and sleeping, but I know that this will simply take time as her body is still healing from the major surgery. 

We are hearing that Emma will go to the recovery floor today as long as there is a room available. It is unreal to us to think that just a week after the surgery we could be moving to the recovery step down floor. To be perfectly honest, we are nervous about this but excited at the same time. 

The doctors had been discussing taking Emma back to the Cath Lab before we left to go back to Texas, but the new consensus that we're hearing is that they want us to come back in around 3 months for that procedure since Emma is doing well. Obviously, if for any reason they think they need to look at things or fix things before we go home then that is what we will do.

We are so very thankful to all of you who continue to pray for sweet girl. Your prayers give Scott and I peace  during this crazy unpredictable medical journey.  We are also extremely grateful to this medical team at Boston Children's  who gave Emma a chance. They have been very understanding, helpful, and caring to our family. We are also thankful to her Dallas team who have checked on Emma and supported us as we worked to get Emma the help she needed. I would also be remiss if I did not thank our family, friends, and church family back home who have helped and continue to help in  so many aspects of our lives. We are blessed and we serve a faithful God.

Prayer Requests:
1. That Emma will begin eating more.

2. That Emma's body will not be accumulate fluid after her chest tubes have been removed.

3. That Emma can rest better at night.

4. That Emma will regain her strength so that she has the stamina to move in play.

5. That Emma's heart repair continues to do well to support her body.

As always, God is good! All the time! God is good!

Tuesday, December 16, 2014

Evening Update

Emma is doing pretty good tonight except being what appears to be uncomfortable and unable to really sleep or rest.  All in all today, she has made really good strides forward.  She had a chest tube removed, was able to come off of CPAP way faster than anticipated and be put on a nasal canula, ate a little food, has had decreased drainage from chest tubes.  Tonight, she is uncomfortable though and running a low grade temperature.  So, we are going to start looking into possibilities for what might be causing this temperature, while trying to also get her to rest.  Right now, Sarah is laying in bed with her and they are both watching The Voice.  This is a short update, I know, but we will update more tomorrow. 

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

Prayer Requests:
1) Pray we figure out what is causing this temperature.
2) Pray Emma becomes more comfortable.  That pain is eased.  That we can help her in any way possible with this.
3) Pray for the medical staff taking such great care of her.
4) Pray that she continues to progress towards not needing these chest tubes.
5) Pray her lungs continue to clear up and that she is able to stay on just the nasal canula.
6) Pray for her nutrition that she is able to keep eating and digesting well.

Thank you all for the continued thoughts and prayers!


Morning Update

Emma had a better night last night. We are trailing her off of the CPAP to see how she is going to do.  Her X-ray was improved but still has some work to do before it is back to baseline.  She has seen Occupational therapy and will see physical therapy soon.  Small steps in the right direction.  Please continue praying for her as we move forward in her post op care. 

Monday, December 15, 2014

Brief update

Emma is resting well tonight.  Her bleeding has almost stopped, and we are praying her X-ray is clear of fluid in the morning.  Thank you again for the prayers.  We are praying tomorrow is a much better day for our precious girl.

Hard day

Well, things have gone from bad to worse today.  Our sweet girl can't seem to catch a break.  After I posted a status this morning, Emma started draining a lot of blood from one of her chest tubes.  She then turned extremely pale and started having difficulty breathing. The OR tram and CVICU team rushed in to assess her....here is what we think happened:

1. Emma's heparin was upped last night because her dose was not therapeutic; however, we think the lab was not drawn correctly.

2. One of the collaterals in Emma's chest was aggravated it just popped open and since she was on too much blood thinner, she had a major bleed.

3. The chest tube in that area has clogged shut and will not drain with leftover blood in her chest.  The blood has collapsed her left lung and made it harder for her to breathe.

4. The loss of blood dropped her oxygen levels, raised her heart rate, and made her extremely lethargic.

5. So, Emma is now on CPAP to help keep her lung somewhat inflated until another chest tube is placed this afternoon by the OR team.

Please pray that Emma does not need to be intubated during the procedure (they are going to try not to).  That they can get the tube in without hitting other collaterals that would cause more bleeding.  That Emma's course can turn around for the better.  She is exhausted and needs to catch a break. 

Special Prayer Request

Please say a little prayer for our Emma this morning please: She had another rough night.  We think she was just not ready for all of the changes...especially with her feeds.  Emma's stomach got huge and was compromising her breathing.  It looks to be air related and that perhaps she wasn't ready for her formula as fast as she was getting it.  We have stopped her feeds and put a pump on her stomach to pump out air.  Please be praying for our girl....she is exhausted and miserable. 

Sunday, December 14, 2014

Post Op Day 4

Today has been a hard day for Miss Priss.  We knew this day was coming, but it is never easy to watch your child be in so much pain.  

Today is the first day that Emma is fully aware of her surroundings and off her pain/sedation meds.  She has been uncomfortable all day, but in true Emma form, she is not crying uncontrollably, but simply looks at you with this sad look in her eyes and a few tears rolling down her cheeks. We NEED her to rest, but also get up and move the fluid out of her lungs.  However, sitting up is causing her extreme discomfort (probably since she still had in three chest tubes).  Her poor little tummy is so distended from sucking in air...that can't be helping the discomfort.  

In other news, we tried to remove her oxygen today, but she is just not ready yet...close, but not quite.  The team is also trying to manage her blood pressure.

All in all she is doing well, but she has some hard days ahead of her as we attempt to get her up and moving, eating, chest tubes out..all while trying to not cause her excessive discomfort and pain. 

Gramma and Grampa left today to go back to Oklahoma, Emma will miss them and so will we...they have made sure we were eating and sleeping....Scott and I might actually have to do that ourselves now lol 😉.  

Please continue to pray for our brave girl as we move into this good but hard time of recovery. 

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

She wants us near her all of the time, so I laid next to her most of the night last night. 

Saturday, December 13, 2014

Post Op Day 3 Continued

So like we posted earlier, Emma is extubated (breathing tube removed)!!! :)

If you remember from our history post surgeries, she has not always done well with this.  We filled Boston in on everything that has happened in the past, and they had everything ready to make this a success.  So, after hours of cutting her meds off that were sedating her, we were able to extubate her at around 3-4am.  She did so well right afterwards and all she needed was a nasal canula giving her some oxygen! God is good!!!

So today, some additional exciting things occurred.  The doctors felt that she was stable enough to remove a few lines.  So, they removed a common atrial iv line, a subclavian iv line, and an art line.  They also removed her foley catheter and have changed the method of draining of her chest tubes in anticipation for removal of one or more tomorrow of in the following days. So great great strides in the right direction.  Huge blessings there.

Right now, she is resting in her bed next to mommy.  They were both watching Christmas Vacation before she dozed off.  She has given several smiles today despite probably not feeling her best. 

We will update more tomorrow as we find out what the plan will be for the day and near future.

As always, a special thank you to everyone for the thoughts and prayers!

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

Prayer Requests:
1) Pray that Emma's lung's continue to clear up now that she is extubated.
2) Pray for all the staff here at Boston who is taking amazing care of Emma.
3) Pray for her to quit draining out of her chest tubes so they can be removed and she can be more comfortable. 
4) Pray that she continues to improve overall each day.

Post op Day 3

I will do a more in depth blog post later today, but this picture speaks volumes.....

A little smile from a big girl who is doing better every day.  Thank you for the continued prayers as Emma continues to make steps in her recovery. 

Friday, December 12, 2014

Post Op Day 2

KSo, quick update.  Emma is doing well.  Today we are working at trying to extubate (remove breathing tube).  So, we cut off everything she was on to keep her sedated thinking it would take around an hour or so and we could remove the breathing tube.  Well in typical Emma fashion, here it is at 9:09pm our time, we started at around 1pm, and we still are not ready to remove.  She is still pretty sedated from everything they used, so we are hoping either over the night or in the morning.  Her heart is stable and everything in terms of her labs and numbers looks good. Huge blessing!  So the plan is just to try to extubate her and then possibly tomorrow, remove some chest tubes and other lines in her chest to make it a little more comfortable. 

I would like to say a special thank you to all the nursing staff, doctors, respiratory therapists, etc etc that are taking such good care of Emma here!  They have all been truly amazing!

We also give thanks to God, who has been with us from the beginning of this journey.  He is truly watching over us and blessing us each day!

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

- Scott

Prayer Requests:
1) Pray that Emma is able to be extubated soon and she is able to stay off the ventilator and breathe on her own well.
2) Pray that they will be able to continue to remove lines from her chest, etc. as this is a good sign that we are becoming more and more stable and it will also make it more comfortable for Emma.
3) Pray for all the healthcare staff that is doing such an amazing job!
4) Pray for strength for Sarah and me as we continue on this journey of life.

Thursday, December 11, 2014

Post-op Day 1

Post-op Day 1

Emma had s fairly uneventful night.  She required some fluid and blood to maintain pressures, but rested well and all things considered did very well.

They are taking her off of the paralytic  in hopes of taking the breathing tube out tomorrow.  Her process of waking up is not going to be easy or fun.  We will be watching her blood pressure, heart rate, oxygen levels etc. very closely to make sure her repair is holding up well once she is no longer sedated.  

If I don't t keep you as updated...please bear with me.  I am not sure if it is the lack of sleep or stress, but I am not feeling very well and am headed to the hotel to try to sleep off my headache and stomachache.   

Prayer Requests:

1. That Emma tolerates coming off the paralytic.

2. Emma's blood pressure stays normal, heart rhythm stays arrhythmia free, and labs looks good.

3. Emma's repair holds up nicely and pressures in her heart stay normalized.

4. That Emma will extubate successfully.

Again we thank you for the prayers. God is good! All the time! God is good!


Wednesday, December 10, 2014

Surgery Update #6

Miss Emma is settled in her CVICU bed and is doing well.  She is having small things tweaked here and there to help with her blood pressure, heart function etc., but other than that, tonight's goal is to keep her calm, comfy, and sedated as well as stable.   

Emma's nurse will be very busy tonight making sure everything is working in Emma's favor.  I have sat down to write this several times, but it never fails that something arises while I am trying to update the blog. For instance, while typing this she needed her mouth suctioned which triggered a small arrhythmia.  Then the team came by to round.  Anyways.....

It will be a busy night tweaking meds, checking labs, and monitoring all of her numbers.  

We appreciate your prayers as we move forward in this recovery phase.  

Prayer Requests:
1. Emma's heart rhythm stays normal
2. Her blood pressure is stable
3. That she puts out good urine output 
4. Her heart function stays normal
5. That her body accepts this new circulation.

God is good!  All the Time!  God is good! 


Surgery update #5

We just talked to the surgeon. Everything was looking good. He was able to do repair to atria and the pressures we were struggling with being so high have dropped significantly. Surgery went according to plan. He also said cardiac function was doing well if not better than before! God is good!! So now we are going back to ICU to recover.  We will update again as we have more info. 

We serve a living and powerful God!

God is good all the time and all the te God is good!!


Surgery Update #4

Great news!  The repair is finished and Emma's heart is pumping on its own.  They are closing her chest right now.  We will get to speak to Dr. Baird in about an hour to get further details.  Thank you for the prayers...please continue to pray as Emma has many more hurdles to overcome in recovery.  Praise God for his constant caring hand on our sweet girl.  We give Him the glory. 

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

Surgery Update #3

Update: Emma is still in surgery. They are unsure what time she will be done. They also said that everything seems to be going as planned, which is a blessing. Please continue to keep Emma in your prayers. She is still bypass at this time and they are still working on repair. She has a long way to go till completion of this surgery and recovery, so again, please pray. 

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


Surgery Update 2

The surgeon was successful in opening Emma's chest, navigating the collaterals and getting Emma on bypass.  Those were huge hurtles Emma had to conquer.  We thank God for continuing to watch over our precious girl.  We will get another update around two.  Please continue praying as they begin the actual repair at this time.  Also, for Emma to do well on bypass.  God is good!  All the time!  God is good! 

Surgery Update 1

They just took Emma back to the OR.  I can't explain how much your messages, pictures, and texts mean so much.  Prayers are much appreciated as she begins this long process. 

Can't wait to see this smiling face again.

Tuesday, December 9, 2014

Latest Update! Emma needs a lot prayer.

Emma is out of the cath and is headed to the CVICU to stay overnight.  They are keeping her intubated in preparation for surgery and since they coiled collaterals during the procedure.

Tomorrow's Plan:

Take Emma back for surgery around 8:30am.  She should be in surgery around 6 hours.  They will be doing several things tomorrow including....

1. Taking down her Glenn circuit 
2. They will take down the area in her atrium that is causing resistance to blood flow.
3. They will be creating a shunt to optimize blood flow to the lungs.

I am not going to sugar coat this....this surgery is our option to give Emma a chance, but it is extremely risky.  Due to all of the collaterals that they formed, there is a huge chance of bleeding.  Also, her right and only ventricle has some decrease in function so there is concern that it could further decrease.

The Boston team is agreeable that this is the best option to give Emma the chance of moving forward; however, they reiterated what a difficult procedure this would be for Emma.

Scott and I know this is what we have to do, but we are most certainly nervous.  Tomorrow is going to be very difficult for us.  We are turning  our daughter over to a new team to give her "THE CHANCE".   

We would really appreciate your prayers tomorrow...specifically 

1.  That they will be able to successfully cut through her chest and collaterals without causing major bleeding.

2. That Emma will have no issues going on or coming off bypass.

3.  That Dr. Baird and his team will have the knowledge and wisdom to make the right choices for Emma during surgery tomorrow.

4.  That Emma's right ventricle will stay strong and pump efficiently after the surgery.

5. That Emma's body will accept the new circulation and heal well.

7. That Emma's post op recovery will be smooth and uneventful.

We serve a faithful God!  God is good!  All the time!  God is good!  I know he has a plan for Emma and we trust in that plan.

Cath Update 2 or 3 or whatever number I'm on...

Emma is stable and is doing well.  They got access and are in the process of taking pics and getting pressure numbers.  Prayers are much appreciated as they continue. 

Cath Update

Emma just went back.  The nurses even sang Dominic the Donkey to her...so sweet (and impressive that they even knew it).  Prayers for a successful intubation, easy cath access, ability to get grew pictures and measurements, and uneventful recovery. 

Cath Update and Hospital Mailing Address

Update: Emma's cath has been delayed further due to some technical issues. We will update again when we are able to get her into the cath lab. 

For those interested in an address, here it is. We just received it:

Boston Children's hospital 
ATTN: Emma Stewart
8 East
300 Longwood Avenue
Boston, MA 02115

God is good all the time, and all the time God is good


Monday, December 8, 2014

Boston Preop Day

Boston Preop Day

We arrived at the hospital around 7am this morning.  The hospital was super easy to find and navigate so we didn't look completely lost this morning 😉.   We checked in at cardiology preop and our very busy day began.  First, we took Emma to radiology for a chest X-ray.  We went back to preop and the took us into a room to do vitals, height, weight, and EKG.  Emma then had 5 vials of blood drawn to check various lab work.  One set of labs was looking at her hemoglobin and hematocrit...like we already knew, these numbers were high...so an overnight stay on the cardiology floor is happening tonight.  

We waited around for cath consent for awhile, but the doctor was busy with another case, so we took her to get an echo.  While waiting for her echo, Scott and I were called back to sign consent for the cath which left Gramma and Grampa to supervise the echo.  Scott and I came in at the very end of her echo and she was doing great.

After her echo, we were given a small break for lunch.  We enjoyed our lunch at Au Bon Pain and met some sweet families.  After lunch, the not so fun waiting game began.  There were no rooms available on the cardiac floor so we were left to wait and wait and wait.  Emma did great, but she was starting to get very tired. They finally let us have an exam room to lay her down while we waited (it was after three by this point).  She finally went to sleep when they got a room ready on the cardiac floor.  

The team on the floor has been very nice.  We are in the new wing which has really big rooms with pretty views.  They will start fluids at some point tonight to help hydrate her for her cath tomorrow.  We are being told that she should be second case tomorrow.  

We have yet to meet her Boston surgeon or cardiologist, but that should happen tomorrow at some point after the cath.  

Emma is finally asleep and will hopefully rest well after her very busy day today.  So far the staff here had been extremely helpful and understanding.  

Thank you all for your support during this journey.  Prayers are appreciated as we approach the cath tomorrow.

Please pray:
1. Emma handles the intubation and extubation well.

2. The cath goes smoothly and the team is able to get the perfect pictures and measurements needed to aid in the surgery.

3. That the team finds the right fluid balance that keeps Emma's lungs happy.

4. That her post op is smooth and uneventful.  

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

Preop Day

We made it to Boston Childrens around 7am and have begun our day of testing.  We will do a big update tonight.  We appreciate all of the encouraging messages we have been receiving. 

Monday, November 10, 2014

One Month

In One Month…………………..

I will hand my precious girl over to a new medical team…..a new surgeon will skillfully open her chest and repair the area where her pulmonary veins enter her left atrium.  I will once again turn my “baby” over to a team, look them in the eyes, and beg them to care for her like they would want their own children cared for during a major open heart surgery.  I will kiss my precious little girl, tell her how much I love her, and once again pray that God puts his hands on her and helps her fight through this next battle in her life.  I will sit in a waiting room with Scott and my parents, anxiously awaiting updates from the OR.  I will stand by my daughter’s hospital bed as life-saving meds and machines support her heart and other organs as she recovers from surgery…….in one month.

We are busy preparing for our trip to Boston.  We have our transportation arranged; hotels booked, and are working diligently to finalize oxygen plans.  This month will no doubt pass quickly as Scott, Emma and I prepare to leave our house for an unknown amount of time. 

We have done our research and are at peace with the decisions we have made.  We are forever indebted to our CMC team for all they have done to help us get to this point and supporting us in this next step.  As we move forward, we continue to ask for your prayers….prayers for Emma, her new Boston medical team, and Scott and I.  Your endless support and encouragement give us the boost we need when we need it the most.  Watch the blog for updates on our Journey to Boston.

As always, God is Good!  All the Time!  God is Good! 

Enjoy a few pics from our recent outing to the Dallas Arboretum 

Monday, October 6, 2014

Happy 4th Birthday Emma Nae

Happy 4th Birthday Emma Nae

          We have been truly blessed with another year with our precious Emma.  A big majority of this last year was filled with time spent in isolation in preparation for procedures so we were unable to get out of house as much as we like too, but we cherished all of our time spent together getting to watch Emma grow and develop. 

Emma has made tremendous strides in her physical development this past year.  Her little legs are gaining muscle and allowing her to bear more weight, take supported steps, and pull herself up from varying heights off of the floor.  Emma is also using sign language to aid in her communication skills.  She is fascinated with animals and is quickly picking up those signs with the help of Signing Time videos.  Her comprehension of vocabulary terms is growing daily.  We very rarely show her a flashcard that she cannot identify.

 Emma loves her stuffed kitty cat and takes her everywhere.  Kitty cat even sports an NG tube, AFOs, and glasses.  Since Emma loves her kitty cat so much, we decided to do a kitty cat-themed birthday party this year.  I had a great time planning and searching for items that resembled her kitty cat.  We got to have her party on her actual birthday this year and Emma once again got to celebrate with family and friends.  Look below for a birthday story in pictures:

Holding my Big Girl at 8:44am!  I did not get to do this on the day she was born so I get my time in every year since.

Emma and Kitty Cat ready for the Big Party!

Kitty Cat Cake made by Gramma and Aunt Joni

Purrfect Party

Kitty ears picture

My Heart, Love, and Joy!

PaPa and MawMaw (PaPa is being silly)

Grampa and Gramma

Uncle Tom Tom, Cousin Trevin, and Aunt Jones

Aunt Randi, Cousin Rhett, Cousin Coen, and Uncle Caleb

Auntie Stacey and Nana Jana

Aaron, Smith, Lorelei, and Sarah

Chad, Danielle, and Addison

Grandma Estes

James and Karla


Dayton and Kasey

Samantha and Rusty

Party Room Set-up

She loved hearing the Birthday Song

Make a Wish

What would I do without these two party helpers?

Yummy Snacks

Checking out her new clothes

Playing Peek-a-Boo with her new kitty

Emma loves books :)

She loved all of her kitty cat toys and clothes
So what is next on our list….well, we have decided to move forward with surgery at Boston Children’s in Boston, Massachusetts.  With the counsel of our current Dallas team and our new Boston team, we believe we have a plan of action to address the area of narrowing where Emma’s pulmonary veins attach to her left atrium.  Scott and I have been doing a lot of praying about wisdom in choosing the best surgical route and hospital for Emma.  The Boston team has been extremely helpful in answering any questions Scott and I have in this process and the surgeon called to speak with us personally about the procedure.  We want to make something clear, we have the utmost respect and adoration for our Dallas team.  They have been remarkable in handling Emma’s healthcare and will continue to monitor her after this surgery; however, Boston simply sees more of these cases and have had success in helping children like Emma become Fontan candidates.  They would like to move soon on this, so we are waiting to hear from their scheduling department this week.  Please keep us in your prayers as we take this HUGE step forward and move out of our COMFORT ZONE to give Emma the chance for a longer life.  We will keep everyone updated as we know more about WHEN the surgery will take place.

As always we appreciate your continued love and support.

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