April 27, 2013 marks 3 years with a good, stable heart!  We are so thankful!! Taylor is well and strong, learning and growing so much.  Here she is running through these, once long hospital halls, to her cardiology appointment.  So grateful!!

Taylor had her annual heart echo earlier in April.  She's doing well.  Her left, mitral valve is still showing moderate leakage.  He's not too concerned for today, as it seems to be managing well with medicine and her size.  He did raise concern again though for the abnormality of this valve.  Due to how damaged it already is, it cannot be repaired.  There is no need for immediate action but he does want to see her again in 6 months.  Eventually she will need this valve replaced with a mechanical one.  He hopes to put this off as long as possible, as it can bring it's own challenges.  Time and growth will tell.   We will continue to trust the Lord with our little star.  Love, Erin

2 years with a good heart!   We are thankful to say Taylor's heart continues to remain stable and she is doing well.   She continues to be monitored every few months.   

We are grateful for those 2 month in the hospital with Taylor.   We only grew so much closer to God during that time.   We can "count it as joy"and "give thanks in the circumstance."   We know we will continue to learn this truth again as other types of trials come along.  The Lord is our sustainer.

"Consider what God has done:  Who can straighten what he has made crooked?  When times are good, be happy; but when times are bad, consider this: God has made the one as well as the other." (Ecclesiastes)

Heart Surgury Journal Posts   (Two Years Ago Today)

 Heart Surgury Journal 

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anything."  (James)  IT'S TRUE

"Consider what God has done:  Who can straighten what he has made crooked?  When times are good, be happy; but when times are bad, consider this: God has made the one as well as the other." (Ecclesiastes)

VIDEO NO LONGER AVAILABLE ON VIMEO

 Kelly Parvin said...

Made me cry!! Amazing. God is so wonderful and Almighty and the giver of all. What an amazing video Erin. I am so thankful for you, that you are all home. I remember that time like it was yesterday. The up's and then the downs. One step forward and then a step or two back. Praise God for today. Thanks for allowing me to share it with you. Love you All.

January 4, 2011 at 3:16 PM

 

 Dean and Natalie Snook said...

Beautiful Video Erin & Aaron. What a blessing to our family!

Natalie

January 5, 2011 at 8:25 AM

 

 Emily said...

Brought tears to my eyes... she is a beautiful blessing!

January 7, 2011 at 12:01 PM

 

 Martha said...

The montage is so wonderful,,,,really tells the story, doesn't it. We are so thankful to God for His faithfulness, strength for all of you, and help with little Taylor.

January 14, 2011 at 6:08 PM

 

 Chris, Becca, Abby and Jocelyn said...

What an amazing little girl:) Surrounded by so much love! Thank you for sharing. XO

January 21, 2011 at 1:51 PM

 

 Michelle said...

awwww, you were sweet to add us in your slide show! Taylor is such an amazing joy. How exciting to watch her grow!!

January 21, 2011 at 8:35 PM

 

 The Lehnick Family said...

What a beautiful video put together with so much love...thanks for sharing that with everyone...she is a doll...brought so many tears to my eyes...

February 28, 2011 at 1:40 PM

 

 Nana said...

Looking back again today...such tears of past moments and humble thanksgiving to our God...such JOY!! Taylor and her family were so protected and blessed during these days and look at her now....what an amazing God we have!

March 14, 2011 at 5:58 PM

 

 Nana said...

When my daughter was on FaceTime with me yesterday, I watched my precious little Taylor walk all up and down the front sidewalk of her home. The joy of being in the center of God's wiracles is a place I never want to take for granted or hesitate in recognizing His glory. Taylor is our little angel and a slight glimpse of what it is to love with an open, unconditional joy. Praise Jesus for what he has shown us through tears and joys of of holding her close...her heart is only the beginning! I love you all so much....

April 27, 2012 at 8:57 AM

 

 Tracy Dodson Photography said...

crying and love you all

Can it be? Taylor is being discharged today!!

THANK YOU for all your faithful prayers and support..

We are so excited to be going HOME. She has been doing so well this past week, we just continue to praise God. She will have her follow-up appointment on Monday. We are so grateful to all her team of doctors and nurses with their amazing care and support.

It has been an unexpected 52 days but we are blessed because of it. God is faithful to His promises, even in the midst of our trials. We do not know what tomorrow holds but we know who holds the future. We will continue to surrender to His will. There's no place we'd rather be..

It's uncertain to when Taylor will need her next heart surgery to replace her mitral valve.  Could be when she's 5.  Could be when she's 10.  Time and her body will tell.     We will rest in Him with that.

"And we know that in all things God works for the good of those who love him...," and He will carry us through them.

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. "

Something New: Our lil' Missy just ate 3 tablespoons of baby cereal. This was her second try.. she loved it. It's been 24 hours without her IV.. she's doing great.. so happy.

She's doing great. So happy and cute. No fever. They are stopping her IV medicine today. We are all hopeful. We are getting your notes.. thank you. They continue to lift our spirits.

Getting out and about. Took the girls to tour the USS Midway. Much needed.

Lovin' our girls.

There has been no fever within the last 48 hours. No indication of infection.. She's down from .03 to .02 on the IV med.. Trying to trust and rest in Him with all of this. It's all so up and down. Taylor was so stinkin' cute yesterday. Blowing raspberries all day and mimicking me. I love her so much.

Fever comes and goes??? Today was good till tonight. They still can't figure out what might be causing them... urg. Still searching.. all labs have come back negative.. might have to search deeper. They've started weaning her of the IV med..

Fever today :(. This means more pokes and labs, to rule out any infection, as well as another IV to administer antibiotic. She's still lifting her legs and blowing raspberries though :).

Day 38..still in the hospital.

She's doing good. Chest xrays continue to remain dry. The docs have been busy the last few days working out a medicine balance with her diuretics. Her heart echo yesterday showed no change. Her left valve still shows moderate leakage but she is showing good heart function and no signs of heart failure. Her right valve actually looks a little bit better. So the tentative plan is to slowly start weaning her off the Nesiritide IV this Sunday. This is her big hurdle yet to get over. Once they wean her off that, they will watch her closely for about a week. The cardiologist is real hopeful this time.

Taylor is doing well, PRAISE THE LORD. Her lungs are looking good and she has been balancing her fluids well.

We were thrilled yesterday to receive the okay for her to go back to Mama's milk.. and oh how it does a body good. She's been eating like a champ! Now she can really gain some weight.

So, we just continue to pray that her body handles the fatty milk, that she continues to balance her fluids and that she can come off the IV med soon.

So.....we are going to get "home" out of our minds for awhile. That's been the hardest struggle this week. That main question, "So when do you think she can go home?" They can't say right now. They are doing what they feel is necessary to help give Tay the best fighting chance. It hurts not be able to take her home... more to let go and give to God.

We are now being told Taylor will need to continue to receive the IV to support her heart for at least another 2 weeks. From there..not sure. Things are always changing. Time will tell. She has been doing so great otherwise. Our prayer is for when they start weening her off. I don't know how long she will be here then, under watch. The concern will be that valve and managing it. She's to little to have a replacement valve at this time.

On a side note, we are seeing ways to connect with others here. I met a mom yesterday who shared how she's been praying for a friends. They've had it rough this past year, staying here with their baby for most of his 9 months. They still don't have a lot of answers yet. Our older kids have been doing school together, so I finally introduced myself. It's been great to talk with her, here their story and just be an encouragement to each other. God is always working in the midst. We continue to grow as we yield to His way not ours.

Taylor is doing better. Her lungs have improved and she has been eating well.

The doctors want to keep our girl in the ICU another week. They are going to support her heart a little longer through IV medication, giving it just a bit more time. They can't explain what happened this past week after she was doing so well, except that there were a lot of factors that could have come into play.

It does most-likely look like the mitral valve will need to be replaced down the road. In the meantime, the goal would be to get her to grow as big as possible. Time and healing would only be able to tell.

Taylor does still look tired and weak as well as a lot thinner. Hopefully as she continues to eat and feel better, she will perk up and get stronger. We need to work on getting her chubby rolls back!

Each day has brought something new. My heart is heavy. In the last 24 hours Tay's lung looks wet again and they have put her back on oxygen. Her nose and eyelids are looking pink and her cry is muffled. They are not sure if she might be fighting another virus. There is no sign of an infection

As far as her heart and valve go, Doc (surgeon) says, "I just don't know..." It still shows moderate regurgitation but he says any little set back right now will have an impact on her heart. He feels as of right now they need to just let her ride this out, get rid of the fluid again and see how she does.

Thank you for the encouragment. We are so blessed by it.

Love,

Taylor is back to ICU tonight. Her electrolytes are all off balance. The past 4 days brought minor challenges to address. With all the different meds they were giving her, they got her levels are out of sorts. Doc said it would be better for her to be back in ICU to get it all under control. They have better tools at their fingertips here and she will be able to make a quicker recovery from all of this.

We're hanging in there..it's been a roller coaster. The Lord is our strength.
Love, Erin

Taylor came down with a stomach bug yesterday and hasn't wanted to eat. They are doing some labs on her just to check everything out. Her blood did show that her hemoglobin levels were low so she's getting some blood now to help her with that. She is taking pedialyte, so hopefully that will help her feel better too. We were looking good for going home tomorrow, but it looks like this will set her back a couple more days.

Taylor is doing well. She has been eating now and doing great with the low-fat formula they've started her on. She will need to be on that for 4-6 weeks. Her final tube was removed this afternoon so we're getting close. I'm hoping for this weekend.

Out of ICU!

Arrived to this, this morning.. (we get excited easily lately)














The girls had been drawing pictures for Taylor. Romeo, our nurse had noticed them wanting to hang them. So he told them he'd take care of it and make it his homework for the night. How sweet is that.. Hayden and Ava are going to love it.

We're moving forward. In the next 24 hours they are going to ween Taylor off the IV treatment that has been helping her facilitate her fluids and relax her heart. We just need to pray now that she will be able to excrete the fluids on her own.

Doc did say Taylor's mitral valve does have moderate leakage but should be fine for a long time with medicine. Time would tell as she grows and gets older, nothing to be certain of now. If this valve were to continue to give her trouble when she's older, a new replacement valve would be needed. But we won't worry about tomorrow..that's in God's hands.

Thank you for all your encouragement and prayer. It's such a blessing to us day by day. We are so thankful for God's provision. He really gives us what we need when we need it. And we really do thank Him for these times in our life. We are able to grow and draw closer to Him.

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance."