Wednesday, September 28, 2011

And the drainage keeps coming.....

Emma's procedures went great yesterday!  Emma actually overcame a previous obstacle yesterday.  She was able to successfully go to the Operating Room and have a chest tube placed and her broviac line removed without need to be intubated.  Cardiac Anesthesia was successfully able to keep her sedated and still with a medication called ketamine.  This was a huge accomplishment for Emma and we are so proud of her.  The chest tube drained almost 70ccs initially (that is over 2ozs). Imagine having that float around in your lungs.  Upon arriving back to the room, Emma woke up from the sedation and was a little irritable (probably from the chest tube insertation), so we gave her a pain med which helped a little.

Emma slept great last night and we were able to wean her back down to 2 liters of oxygen flow; however, as the day progressed, Emma started acting very cranky and started having desat episodes again.  We had turned her oxygen down to 1 liter today as we thought she could handle it.....needless to say, we have her turned back up to 3 liters and just got an x-ray and chest ultrasound to look for possible fluid on the right side.  Her sats have been fine the last few hours, so hopefully she is settling out.  We also gave her a dose of pain meds.  We don't want her to be in pain, and it is a possibility that if she is, she could be guarding and not breathing like she should (the screaming and crying do not help her sats either).  We have not heard from the team yet on if she has fluid building on the right.  If she does, we will cross that bridge when we get there.

The plan right now is to start pushing  to eat more orally.  The team would really like to see her consuming food instead of formula down the NG tube only.  We also let her wear her helmet for a little bit today and had her do some prop sitting.  Therapists will be restarting therapy this week as well.

All in all, the team is still happy with Emma's status.  They would be happier if she was not draining as much fluid, but like Dr. Forbess said, they are not surprised as she did this after the first surgery and her lymphatics are very prominent.  We are hoping and praying that she does not need to have the chest tubes long and that her drainage will stop soon.

Next week,, my baby will turn one!  What a year it has been!  It looks like we will be celebrating her birthday in the hospital this year, but we will be celebrating and that is what matters.  Both of the cardiac floors are very full right now.  They are talking about sending us to the 8th floor, but we are like number 8 or 9 on the waiting list so we will just have to wait and see.

Prayer Requests:

1. Please pray that Emma's lymph system heals quickly so she can get the chest tubes out.
2. Pray that Emma's sats stay up so we can wean on the oxygen.
3. Pray that Emma tolerates her therapies and continues to progress in her development.
4. Pray that Emma can not be in much pain from the recent procedures.
5. Pray for Emma's heart buddies.
6. Pray for Scott and I was continue on this journey with Emma.

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

Much Thanks to all of you who have helped thusfar with the Hope From Emma's Heart project.  We have some really cute things to give to the babies.  We would really like all of the items by October 10th.

We have also been helping with a documentary about HLHS: check out the trailer: HLHS Documentary 
click on the teaser trailer button, and then the teaser trailer #2 button!

Monday, September 26, 2011

Speed Bump

Speed Bump

Today presented Emma with a slight speed bump in her road toward recovery.  Early this morning (around 2 am), Emma started experiencing momentary desaturation episodes.  She would bring her sats back up, but any major cough, throw-up session brought on another desat.  Well, Scott and I had a sneaky suspicion that Emma was building up fluid in her chest.  The doctors removed her chest tubes yesterday, as they were not putting out much fluid.  Well, her x-ray did not show much change and her blood work was fine so they were debating what step to take next.  It was decided that they would do a sonogram of her chest cavity and her kidneys…..(side note: Emma had a bloody urine diaper last night too).  The results of the sonogram showed a pleural effusion in her left chest area.  This explains her desat episodes.  Her kidney sonogram looked good.

So, tomorrow’s plan is as follows: Emma will go to the Operating Room (at some point) and have her broviac line removed, her clogged tear duct probed, and a chest tube put in to drain the excess fluid.  In saying this, Emma has had a good day overall and the doctors are pleased with her progress.  We expected to see pleural effusions post surgery, as this is something she had post Norwood.  In order to help Emma with this fluid, Scott and I are taking turns to hold her with her left side up.

Please Pray that:

1.     Emma’s procedures go smoothly tomorrow.
2.     She can be successfully extubated quickly.
3.     Her pleural effusions resolve themselves soon.
4.     Her recovery continues to be smooth.
5.     Our heart buddies have the strength to keep going.
6.     One of our heart buddies: Gracie has many more days with her family or that she can prove the doctors wrong and live a long time.

We are so humbled by the love, support, and prayers.  God is Good!  All the Time!

P.S.  If you have items for Hope From Emma’s Heart, please have them to us by October 10th!

Sunday, September 25, 2011

The Road Ahead

Let me start off by saying that everyone here is pleased with how Emma is doing!  What an answered prayer!!!!  :)  Now, we are not quite ready to go home yet...  She still needs to get this broviac line out since it is a definite infection risk!  To do that, however, she has to go to the OR and have one of the surgeons remove the line.  Since this has to be done, we are going to have them probe her clogged tear duct in her eye so that we don't have to do that at a later time.  They have not set a time for this to all occur but it will more than likely be sometime early this week. 

Emma got to have her chest tubes removed today.  They were no longer draining enough to be left in.  She also got her pacing wires removed during this as well.  We even got the okay to take her temp probe and two sensors that monitor oxygen sats off.  So, lots of things removed from her which no doubt make her feel better, but make it even easier to hold her and play with her!!!! ;)

All in all, she has had a really good day with lots of smiles, lots of play time, and holding time.  We look forward to the days ahead as she continues to recover!

Some prayer requests:
1)  Pray for Emmas upcoming trip to the OR, that it goes smoothly and they are able to achieve everything they set out to do.
2)  Pray Emma continues to recover each day.
3)  Pray for the doctors, nursing staff, and all the staff here at Childrens as they take amazing care of Emma!

As always, we give the thanks to God who continues to richly bless our family each and everyday.  God is good, all the time.  And all the time, God is good!

Scott, Emma, and Gramma!  Learning how to give Emma's shots.

Hi, Grampa! 

Two Peas in a Pod :)

Friday, September 23, 2011

Fat free diet again :(

Well BOO :(. It looks like Emma is getting chylous effusions back!  Fat free formula is on the menu tonight!  Please pray that her lymph system heals quickly! 

Fabulous Friday

Fabulous Friday

Today has been another good day for Miss Emma.  They removed her intracardiac lines today which means--------WE GOT TO HOLD HER!  They are switching all of her meds to PO (by mouth, or in her case by NG tube). 

They also split her chest tubes to see which side is draining the most.  This will help them determine if and what side chest tubes they can pull out.  Her drainage has slowed way down, which is a good thing. 

It seems that her incision site is beginning to itch.  Emma has really tried to claw at it today so we have spent a lot of time keeping her preoccupied with toys, books, and Baby Einstein. 

They are telling us that more than likely, they will take Emma to the OR on Monday to remove her central line.  Her central line stopped working the Saturday before her surgery and is an infection risk if left in.  They are also trying to work out a plan with Ophthalmology to probe her clogged tear duct at the same time.  While we are not 100% certain this will happen, please be praying that if it does she will do well through it and will be able to be extubated quickly.  We hate that she has to be intubated so soon, but know that this needs to be done. 

Prayer Requests:
1.     Please pray that Emma continues to recover quickly and fully.
2.     Please pray that Emma’s upcoming procedures are smooth and without complications.  Also, that Emma can be extubated quickly afterwards.
3.     Please pray that Emma is as pain free as possible.
4.     Please pray for the doctors, surgeons, and nurses in charge of her care.
5.     Please pray for our fellow heart buddies.  There are some families we know that have not gotten great news this week and could really use our encouragement and prayers.  I will say pray for baby “G”  and her family.

As always, we love and appreciate the support and prayers.  We are truly blessed.

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

Family Time!

Love our Daddy!

I will get you with my foot Gramma!

Playing with Mommy

Thursday, September 22, 2011

Update on Miss Emma

Miss Emma slept well throughout the night.  She did wake up a couple times wanting to be entertained ;), but all in all, she had a really good night.  We have been greeted with many big smiles today which is a good sign that she is feeling better.  She has also played more today with all her many toys that we brought with her.  It is really good to see her in such a good mood!  Often these babies will have migraine headaches following the Glenn but for Emma, she seems to be doing fine and if she is having them, they are not really bad which is an answered prayer.  

The doctors are also very pleased with where she is at clinically.  They said earlier, during rounds, that our plans would be pretty simple, ween on her oxygen support and continue to feed while also removing intracardiac and other IV lines when able. Also, chest tubes will be removed when able.  Today, we have weened down on her vapotherm support from 8 to 6 liters.  We have also continued her feeds and restarted some other medications she was on at home that we had not restarted yet.  Our plan for tomorrow is to remove the intracardiac lines which is a good thing because it means she will get to sit in her bouncy and have some fun!! :)  Also, they are planning on decreasing the flow of her oxygen again. All good things, so pray that we are able to do those things and any other things tomorrow that will continue to help with her recovery process.  

With all the uncertainties that we had yesterday, it made today, a day filled with much more fun and happy moments, very enjoyable.  As we continue down this road to recovery, we continue to ask you all to keep little miss Emma in your prayers.  Lord willing, she will continue to do well through this recovery phase, and we will be able to leave soon and, go home.

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

Wednesday, September 21, 2011

Today's Wrap-up


Today started out being very eventful for Emma.  Emma was retaining a lot of fluid, was very swollen, and was fairly irritable.  These things coupled with a lot of congestion caused Emma to have a rise in her lung pressures, and an increase CO2 retention.  The team debated back and forth whether or not it would be a good idea to send her to the Cath lab for further evaluation.  After much debate, two echos, and bilateral chest x-ray, and fluoroscopy, it was decided that her echo looked good and the stint in the left pulmonary artery looked intact.  Therefore, the team decided to hold on the cath unless it became absolutely necessary.  YAY!

Emma is also “waking” up from the sedation and is becoming more aware of her pain.  She desperately needs to cough to clear the mucous in her upper airway, but it obviously hurts her to do so, so all she does is a very wimpy cough and subdued sneezes. 

The doctors are being aggressive with the diuretics to help keep Emma from getting so puffy and fluid overloaded.  They started feeding her again tonight which she is tolerating well.  They also took out her IJ (neck line).  This is way more comfortable for Emma.  The last piece to their plan right now is to wean the Vapotherm a little more tonight.

All in all, Emma has turned this day around and was extremely happy this evening.  She was playing, laughing, and cooing at us trying to get our attention. 

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

Prayer Requests:
1.     Please pray that Emma can keep the fluid off
2.     Pray that Emma can keep weaning on the Vapotherm
3.     Pray that Emma can tolerate her formula and that her chest tube drainage slows down.
4.     Pray that Emma continues to move forward and recover
5.     Pray that Emma’s pain is minimal.
6.     Pray for her Surgeons, Doctors, and Nurses caring for her.
7.     Pray for her Heart buddies (some of them are having a very difficult time)

Worn out Emma this morning

Happier Emma tonight!

Brief Update

So far, emma's echo looked fine (which is good).  Her pressures are not as high as they were this morning!  Now we are dealing with her being aware of more pain and she is congested but won't cough it up because coughing is very painful for her.  They are about to take her to get a picture of her left pulmonary artery!  Please pray that things continue to look good!  

Prayer request

Please keep praying for Emma!  Her pressures are still up and her oxygen sats keep dropping to low 70s, then they will come back up to high 70s/low 80s, then back down again.  We are waiting on her surgeon to get here for rounds to decide what to do!  

Tuesday, September 20, 2011

Update on Miss Emma

Emma had a pretty good night.  Woke up several times, restless, and needing us by her side.  So, not a whole lot of sleep for any of us really but no major problems, which is great!  Today, she is a little more alert but is again, restless.  Her blood gases (oxygen, CO2, etc.) have normalized back out.  She is on Vapotherm still, but they are weening it down.  The doctors are overall pleased with her progress that she is making. 

We have been able to get a few smiles out of her this morning.  She is still very groggy though so we have to be persistent in entertaining her to get those smiles.  But we all have sang together, read books, laughed, talked, and of course, given lots of kisses. 

All in all, she is doing good for all that she has been through.  Continue to pray for her post-op t, that it continues to go smoothly and she continues to to improve.

The plan for today is to ween her Vapotherm from 15 liters to 12 liters and see how she does.  Also, they are going to pull out her foley catheter and start up her feeds and meds again.  Hopefully she will tolerate everything well.

Thank you all for the continued thoughts and prayers!

God is good, all the time.  And all the time, God is good!  We give thanks to Him for the progress that she is making and has made!

Monday, September 19, 2011

Evening Update

Emma has had a good day overall.   We are dealing with a few issues right now that are preventing her from really making it over the "hump" so-to-speak.  Emma has run a fairly high temperature since coming back from surgery.  It got up 103 this evening.  It is back down to 101.6 which is better but not great.  We are giving her IV tylenol and toradol to try to control it.  They believe it is from inflammation from the surgery.

Good news is that we were able to take her breathing tube out today.  However, she is still not fully awake, so we are having to give her extra support in the form of Vapotherm (or a high flow nasal cannula).  She is on 15 liters at 100% oxygen right now.  Our goal is to try to get her to wake up more then start weaning her as she can tolerate.

Emma is in a lot of pain and is easily agitated.  We can't give her much for the pain because it will make her too sleepy and she will not breathe appropriately.  She flails her arms and feet around a lot.  We have to really watch her because she has so many lines, IVs, drainage tubes, etc. that we do not want her to pull any out on accident.

The plan right now is to keep checking her blood gases to make sure she is blowing off enough CO2, try to get her temp down, keep her as comfortable as possible, and hopefully restart her feeds in the morning.
We appreciate the continued prayers.  Emma has really had a pretty good day overall, but the next few days will be hard on her.   

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

Daddy and Emma after extubation!

Mommy and Emma

Update on Miss Emma

We are in our ICU room.  She got in here around 12:10 pm and got all prepped and ready for us to come back.  Around 2 pm, we were able to come back here and be with her.  She is doing good and is trying to wake up as I type this update.  With all of her pain/sedation meds, it is taking her a little while to wake back up.  They are hoping that she will wake up soon so that we can extubate her and get her progressing quickly down this road to recovery.  We will keep everyone updated as this day continues with the progress that Emma is making.  Continue to keep her in your prayers as she goes through this recovery phase, that it is a successful, quick, recovery.

Also, for all those praying out there, Emma is running a temperature which is not helping her recover.  Please pray that the fever goes away quickly!

My precious little girl
God is good!

Dr. Forbess Update

Dr. Forbess just came by and talked with us.  He reaffirmed some of the things that we had heard from the staff earlier.  He stated that her pressure was a little elevated above normal and that we would just have to watch how it affects her.  He stated that she only had to be on bypass for 39 minutes which is really good (and fast!).  He also said that her sats were good, in the mid to upper 80s.  He said that if anything looked concerning or for some reason they could not get her extubated quickly (within 24 hours or so), that they would more than likely take her to the cath lab to see if they could find anything.  We are praying that she extubates quickly (and stays extubated) and that her overall post-op recovery is quick and smooth!

Thank you all for the continued prayers!

Update Number 3

Emma's surgery is DONE!  Emma is off bypass and doing well.  Dr. Forbess decided to not mess with her pulmonary arteries right now. She is requiring 100% oxygen which is to be expected right now.  One of her heart pressures is a little elevated.  They expect it to be around 14 and Emma's  is 17, so not elevated much.  Our cardiologist said he kind of expected Emma's to be slightly elevated.  We are waiting to talk to Dr. Forbess and will know more details at that time.  The good news is that things went well and she is off of Bypass.  Please keep praying that her post op is smooth.

Right before surgery

Second Update on Miss Emma

We received a phone call a couple of minutes ago that everything was still going good.  She has been put on bypass and they were working on removing her sano shunt and proceding with the Glenn procedure.  Please continue to keep Emma, the doctors, nurses, and all medical staff in your prayers.  Thank you!

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

Showing us her new accessory last night :)

First Update

Emma is doing good.  They were able to open her up without any complications.  She is not on bypass machine yet, but that is what they are working towards now.  Thank you for the prayers and please keep praying for our little Princess. 
Looking Stylish for Dr. Forbess

Emma is in Surgery

Emma went back for surgery around 7:45am!  Emma had a good night and rested fairly well.  Her central line has stopped working...:( so she will need to have several PIV lines put in today.  They put in one PIV last night and Emma did not even cry.  She is such a big girl.  The surgery should last between 4-6 hours.  We will update the blog as we are updates which should be around every hour or so.  Please remember that our blog is the ultimate reference point on how Emma is doing. 

Prayer Requests: 

Prayer Requests:
2.     Please pray that Emma’s surgery and post op recovery are smooth.
Pl   Please pray that Emma's surgery goes great and there are no complications.
P    Please pray that Emma's heart can stay arrhythmia free.
3.     Please pray for the surgeons, doctors, and nurses that will be caring for Emma.
4.     Please pray for peace for Scott and I.
5.     Pray for Emma’s other heart buddies.

Scott and Sarah

God is Good!  All the Time! 

Silly baby would not sit still for the picture! :)

Check out her "helmet hair"

Getting some lovin' from Daddy!

It only took one nurse for transport this time!  Way different than the Norwood!  Be strong baby girl! 

Wednesday, September 14, 2011

Countdown...Again..Also Hope From Emma's Heart

We are once again in the countdown to Emma’s Glenn.  The Glenn will be performed on Monday, September 19th.  Emma will be the first case.  Scott and I humbly ask for your prayers as this surgery nears.  It will be very hard to send Emma into this surgery.  Although we know she desperately needs it, we also know how difficult surgeries are on our little Princess.  In recent talks with the doctors, we have learned that Emma will be one of the oldest Sano shunts (if not the oldest) going into this surgery.  In true form, our little Emma is not doing things like normal.  We like to think that she is extra special. 

We are starting to get fun and adorable items for the Hope From Emma’s Heart organization.  We are so excited to see this project come to fruition.  We thank each and every one of you from the bottom of our hearts for the monetary gifts and the baby items given to help with this project.  If you are planning on helping with this, please have all of the items to us by October 10th.  If you have any questions, please let me know. 

I think a lot about what these next few weeks will bring for our family.  What will Emma have to endure, what decisions will Scott and I have to make, how much pain will she be in, etc.  I have spent much time in prayer about this and truly put it in God’s hands.  The song below, written beautifully by Matt Hammitt, expresses so many feelings that I have felt.  I sing this to Emma almost daily when we have our “hold me” time.  Emma will have all of me---regardless and I am truly treasuring all of these precious moments that I have with her.  Please take a minute and give God thanks for all that he has given you.  We are blessed people ultimately because (John 3:16) God gave us the ultimate blessing. 

The following lyrics are from:  All of Me by Matt Hammitt (a fellow HLHS parent)

I won’t let sadness steal you from my arms

I won’t let pain keep you from my heart

I’ll trade the fear of all that I could lose

For every moment I’ll share with you

You’re gonna have all of me

You’re gonna have all of me

You’re worth every falling tear

You’re worth facing any fear
You’re gonna know all my love

Even if it’s not enough

Enough to mend our broken hearts

But giving you all of me is where I’ll start

I am going to ask a special request for some fellow heart buddies.  These precious children and their families need our prayers as they are on a very bumpy course right now.  Please pray for Keegan, Brooklyn, Scarlet, Rylynn, and Leah.  We have not met all of these families in person, but are connected through blogs, Facebook, and other heart families. 

Prayer Requests:
1.     Please pray that Emma can stay infection and virus free
2.     Please pray that Emma’s surgery and post op recovery are smooth.
3.     Please pray for the surgeons, doctors, and nurses that will be caring for Emma.
4.     Please pray for peace for Scott and I.
5.     Pray for Emma’s other heart buddies.

Sarah (Emma's Mommy)

God is Good!  All the Time!  

Also, please remember to check the blog on surgery day as that is where updates will be.

Mesmerized by the OU game. ;)  Boomer!

Watching the game with Gramma and Grampa!

The Look-a-likes!

Making funny faces at Great GP

Our beautiful baby girl!

Friday, September 2, 2011

The New Plan............For Now Anyways!

As many of you know, Emma was brought into the hospital last week due to an unexplained emergency situation.  Well, we still do not know what happened and probably never will.  In pure Emma style, when testing for infection, all of Emma’s tests came back negative.  She was obviously exhibiting signs of some infection (cough, on and off low grade fevers, yucky looking chest x-ray, etc.); however, in the doctor’s words, your daughter NEVER does anything by the book.  Poor Emma, she is only 10 months old and already has a reputation for being difficult.  At least she is ADORABLE while being difficult.  HA HA!  The doctors ended up treating Emma for an A-typical pneumonia.  She improved and was sent home.  On a positive note, Emma’s eye infection seems to be all gone.

So, what is the new plan?  The new plan is to do the Glenn on September 19th.  We know that Emma will not be an easy Glenn; however, we hope and pray that this surgery will be successful for her.  What is really hard with Emma is that she has never really fit into any mold, so it is like going into uncharted territory.  It is so hard to take Emma into another surgery knowing how difficult her past procedures have been on her.  We do this in hopes that Emma be able to avoid transplant for a while.  She makes us all a little nervous, but she has proven that she is a fighter therefore; we continue to fight for her. 

Prayer Requests:

Please pray that Emma can stay infection free until her surgery.
Please pray that Emma’s surgery is successful.
Please pray that Emma’s post op is smooth.
Please pray for the doctors, nurses, etc. that will be taking care of Emma.
Pray for all of Emma’s heart buddies.

God is Good!  All the time!

Sarah (Emma’s Mommy)

P.S.  Please consider helping with the Hope From Emma’s Heart organization!

God is Good! All the Time!