Happy Hearts

heart baby updates

Thank you all for praying for baby Ashton, his mommy, and Shauntae.  I was gone all weekend and am trying to get caught up.  I don't know a lot but I do know that he had a really rough day on Friday.  He had a blood clot in his aorta and his stomach.  However, as of Sunday, the large doses of heparin had gotten those clots broken up and things were looking much better.  I do not know anything after that.  So, as of Sunday, he was doing much better.  I hope to hear from Shauntae tonight.  Thank you for all of your prayers.

Also, lil miss Charlotte is a ROCK STAR!  She had her glenn last thursday and went home yesterday.  She decided to be just like Maggie Jane and only stay in the hospital for 4 days!  These kids are amazing! 

Baby Abbie, who was born at the end of November with HLHS will be having her Glenn surgery on April 9th.  She had her cardiac cath yesterday to prepare for the surgery.  I am hoping that they are home by now, but I haven't heard yet.  Please be praying for Abbie and her family.  Some of you may remember her from my blog.  This is the baby who had the mysterious miracle vessels that saved her life.

Please Pray

Shauntae (sweet Kaitlyn's mom) called and asked that I send out a prayer request to you all.  A lady that she has known since kindergarten had a baby boy a few months ago who has Hypo Plastic Left Heart Syndrome.  Ashton has done fairly well since his first surgery and had his Glenn surgery (2nd of 3)  last week.  He seemed to be doing fairly well but has developed some complications in the last couple of days.  They attempted to take him off the vent today but were unsuccessful so he is back on the vent and has gone in to cardiac arrest at least once.  Please pray for sweet Ashton and his mom, Diane.  I don't know a lot of details, but God knows every single one even the ones the docs don't know yet.

Also, please pray for Shauntae.  I don't know why God has put her in this situation so soon after losing Kaitlyn, but He has.  Please pray that He gives her the strength that she needs to be a support to her friend while she herself still needs so much. 

I hurt for both of these mamas.  Please pray.

Pray for Charlotte

Please pray for Charlotte.  She has Hypo plastic Left Heart Syndrome and will have her Glenn surgery tomorrow (2nd of 3 surgeries).  Please pray that God will guide the doctors, give Charloote strength, and her family peace.

Please Pray

Please be in prayer for little "Ryan" who I mentioned last week.  They were hoping to wait a couple months for his first heart surgery.  However, God has something else in mind.  Ryan's sats have dropped quite significantly and surgery is immediately necessary.  To put it bluntly, Ryan's heart is about as messed up as they get and the odds are absolutely terrible.  He will be going in for surgery at 9:30 tomorrow (thursday) morning.  Please be praying for Ryan, his family, and the surgical team.  The surgeon said that this is about as complicated of a surgery as they ever do and no child has survived such complicated heart defects yet.  However, we know that God is bigger than any of this and He knows the outcome.  Please be praying for little Ryan tomorrow.

Please Pray

Please be in prayer for baby Henry or also nicknamed Ryan.  He is 1 week old and is quite the special little boy.  He was born with his heart and his stomach outside of his body.  As if that was not enough, his heart has several severe heart defects:  HRHS, absent PDA (ductus), an additional superior vena cavae, pulmonary stenosis, and tricuspid artresia (a missing valve).  This little guy and his family have a long road in front of them.  Please keep them in your prayers and head over to their site to see their beautiful family:  http://marquissclan.blogspot.com/

Kaitlyn Grace Staiger

I have been putting this post off because I'm just not sure what to say.  I have thought about it all week, and I'm still just not sure how much needs to be written.  These last three weeks have been a roller coaster of events and emotions.  I am still often at a loss for words and I am still asking God "why?".  He is a good God, He is in control, and yet bad things do still happen.  At Kaitlyn's service on wednesday, the pastor talked about how life is often like a tapestry.  All of the events are woven together into one very detailed and complex piece.  However, many times we are only allowed to see the back of the tapestry.  We see unraveled ends, colors that don't go together, and a picture that looks very confusing.  However, God has designed the tapestry to all go together.  He knows why He chose the colors that He did, He knows that on the front the threads all fit together, and He sees the beautiful and perfect picture.  Some day, we will see the front of the tapestry.  We will sit at His feet and He will show it all to us.  We will, some day, understand "why".  I do find hope in this.  However, it is so hard to wait for that day.

Wednesday, was a day to celebrate Kaitlyn's life.  There were beautiful pictures of Kaitlyn in the church and their was a DVD slide show that showed just how beautiful she was.  The front of the churh was filled with gorgeous flowers which showed just how loved she really is.  The congregation sang I Surrender All and Amazing Grace which were the two songs that Shauntae sang to her while she was still in her womb.  It was a beautiful, emotional, and heart wrenching day. 

Please continue to pray for Jay and Shauntae as they begin to figure out how to go on with their lives without their baby girl.  They truely appreciate all of the prayers.  

Kaitlyn Grace Staiger

Here is a note from Kaitlyn's wonderful Daddy, Jay:

 

At 8:35 pm last night we gave back to God the gift that he gave us 59 days ago.  Our little angel went to be a real angel and we, her father and mother, had to let her go back to her heavenly father.

Kaitlyn Grace was truly a blessing in our lives and touched so many other lives...people that we know and people that we can only dream of.
Everyone absolutely flooded heaven with prayers for her and for this we will be eternally grateful to each and every one of you who said even the smallest of prayers.

Kaitlyn leaves behind so many of us to become whole again in the kingdom of God.  No more pokes, or beeps, or pain.  She leaves behind so many wonderful memories packed into a too-short 59 days.  She leaves behind a legacy of spirit and fight and a never-give-up attitude that I will spend the rest of my life trying to live up to.  How many two month olds can say they have created a legacy?

Thank you all for being with her in spirit.  I just know she could feel it all around her.

The Saturday before her surgery, Jane Holestine and Faith Mahoney, two wonderful family friends took some wonderful pictures of Kaitlyn Grace Staiger that we will always treasure as well as the memories of that wonderful wonderful day.  We are indebted to her for this day which we will remember forever.
 
  

Kaitlyn Grace Staiger: 12/2/08 1:02pm - 1/30/09 8:35pm

More pictures of our beautiful perfect angel are available at:

www.janeholestinephotography.com

Click gallery "j" Baby K and the password is "Jay"

 

This all may have broken her worldly body.  But this never took away her spirit.  She never gave up - she never ever gave up.
 

We love Kaitlyn so much.  She will always be our "Katie G", our "Katie Bug", our "little pumpkin."  And we will definitely see her again...

 

-- Jay and Shauntae Staiger

Praise God!

**Update:  I just got a message from Jay that said Kaitlyn is holding stable for now.  Keep praying that she stays stable and keeps fighting.

Jay just called me at 2:45 to let me know that Kaitlyn is off of ECMO and she is alive!  Praise God, praise God, praise God!  She is on meds to control her blood pressure and she is obviously still on the ventilator.  They did not have to do anything with the central shunt at this point.  The next 24 hours are very critical and if she can make it through the next day, her chances go way up.  Please pray that Kaitlyn stays strong and that her heart can continue to pump.  Also, pray for her liver and kidneys as they were affected by ECMO but they can definitely bounce back.  Pray for wisdom for the docs and strength for Jay and Shauntae.

Thank you all for your prayers!

Tomorrow is the day

 

Jay called me a few minutes ago with a message to pass on to all of you.  I took notes this time so that I will be able to pass along the important details.

 

Todays echocardiogram didn't show increased heart function, however her heart function is suitable.  Generally, they find that while on ECMO heart function improves and then hits a plateau.  Dr. Huddleston believes that Kaitlyn's heart function has plateaued.  Being on ECMO anymore past this point is not necessarily beneficial and it has very high risks.  He also said that it is best to attempt to take her off of ECMO while things are stable so that they have time to tweek things as much as possible.  In an emergency situation, they are not allowed that luxury.  They are waiting until tomorrow so that Dr. Huddleston can have his team all lined up.

 

So, tomorrow at NOON Dr. Huddleston and his team will do everything in their power to save precious little Kaitlyn.  They will clamp the ECMO lines and then begin their "tweeking".  The two important numbers are the blood pressure and the oxygen saturations.  They can control the blood pressure with meds and the oxygen sats with the vent.  If necessary, they will open the central shunt and see if that will help things.  I know that many of you are recalling that the central shunt is what caused all of this in the first place.  Dr. H. said that it is more likely to help things 5 days post surgery after things have healed a little.

 

I don't know how to relay the seriousness of this very well.  Dr. Huddleston said that coming off of ECMO kids have a 50/50 chance and Kaitlyn's are probably a little lower than that.  Yes, they could always put her back on ECMO however, Dr. Huddleston said that there is not much gained from that.  So, tomorrow is the day.

 

As her amazing Daddy said, "tomorrow will be a life changing day".  Jay knows that we cannot all be there with them tomorrow in person.  However, he asks that we all be with them in spirit.  Please lift this sweet family up in prayer all night and all day and especially at 12:00 tomorrow.  God is a big God and this is not bigger than Him. 

 

Pray, pray, pray!

 

In His Grasp,

Faith Mahoney

Kaitlyn Grace

Good Morning,

 

Jay called this morning and things are still moving in the right direction.  They're moving slowly, but at least they're moving.  They are basically reevaluating things every 12 hours.  If things continue to look okay with her head scans, then they leave her on ECMO so her heart can get stronger.  All of her "counts" are moving in the right direction, and ECMO is turned down as much as it can be!  That is great news.  They are still working with the seizures which are "sub-clinical" so they aren't full blown seizures.  However, they are still concerned with them and trying to get them under control.  The seizure med does unfortunately relax her heart so it works a little bit against the final outcome.  However, the docs don't believe that it will affect her coming off of ECMO. 

Please continue to pray that she will come off of ECMO successfully and that Dr. Huddleston will have wisdom when he makes the final decision about the central shunt. 

At one point this morning, they had to turn her sedation meds down while they did some tweeking and she "came back to them".  She looked around the room and moved her arms around.  These moments are so helpful to Jay and Shauntae.  They give them the hope that they need to keep going.  Kaitlyn is still fighting, and the doctors remain optimistic. 

 

I'm sorry that this is so vague.  I get the details confused when he is explaining everything over the phone.  That's it for now.  Keep praying.