You didn't think that just because I'm in survival mode with Stellan in the PICU that I don't still love alliteration, did you?
Because I so, totally, still do.
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Etsy sellers and buyers unite!
As you may know, I love buying handmade, and Etsy makes that so simple. Well, a friend of mine named Shelley and her friend have a super cute hair clippie Etsy site where I have gotten some of Small Fry's barrettes in the past (Small Fry even "models" some of the clips on their site!).
Well, Shelley was the brainchild behind the Etsy Sellers Support Stellan (say that six times fast....) Project, intended to bless our family.
Wow.
Interested? Here is a blurb straight from Shelley:
In an effort to help sweet baby Stellan and his beautiful family out with the many expenses associated with his current health condition, many Etsy sellers are pulling together to collect funds for the MckFamily by donating the proceeds from certain items in their shops. To support this project as an Etsy buyer, simply go to Etsy.com. Enter 'stellan' into the search, and shop away! Our hope is to spread the word, so that many other sellers will join in on the 'Etsy Sellers Support Stellan Project'.
If you are an Etsy seller and wish to bring Stellan's supporters to your Etsy site to shop, simply go here to find a secure link to donate proceeds from certain items or use the Stellan's Fund donation button on MckMama's sidebar. Both donation sites go to the same fund, set up by blog reader and MckFamily supporter Jess. Every sale made for baby Stellan on Etsy is such a blessing!
You guys rock, big time. And so do those of you who are waiting in a queue at the office manager's desk here at the Sheraton ready to pay for one night in the hotel if we need it.
I really have no words for that kind of love and generosity. Thank you.
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Sleepy Saturday, and other S's.
It's a sleepy Saturday for Stellan. We switched spots. Again. Stellan is still in the PICU (Pediatric Intensive Care Unit), we just moved laterally (not up to a different floor or anything) because he had been in a double room and now that we know that he has Rotovirus, contact isolation was called for.
It's nice actually. The room is quieter, private, and has two huge windows. 
One of the nurses tossed his orange and blue striped BabyLegs leggings into the hospital wash on accident during the move though, so that was a bummer.
Leggingless, Stellan has been enjoying a sleepy day snoozing in my lap and in his crib. Meanwhile, he continues to have more and more frequent breakthrough episodes of SVT.
That is really frustrating for me.
Stellan is still on his iv drip and all talk of weaning him off is totally on hold now. We are busily working on seeking some second opinions elsewhere, so if you wanted to be in specific prayer for wisdom for all concerned as far as that goes, that would be wonderful.
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On a rather unrelated note, planning for the MckCruise marches forward!! We have had a ton of interest in our cruise next January still rolling in these past two weeks, but I have been booted off the planning committee by Ronica, our sweet travel agent and my new friend. She insisted on taking over the emailing and cruise communication for me since I have so much on my plate with Stellan right now.
So! You can still click on the MckCruise button in my sidebar or email Ronica at mckcruise@gmail.com and she'll get back to you! There are still spots left and Stellan wants to make sure that everyone who wants to sail with him next January when he's all healthy will be able to!
Saturday, April 04, 2009
Sleepy Saturday, some SVT, seeking second-opinion, Etsy sellers support Stellan!
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166 comments:
praying so hard...
- michelle
It's always good to hear how to pray specifically for you and that sweet boy of ours...ahem I mean yours;)
So sorry it's frustrating....I can't even imagine.
Man wouldn't I like to be on that cruise to see you and him!
Thanks for the specific prayer request... I will be bringing to God asap.
many blessings-
Amanda
Praying for wisdom, healing, and continued peace in that lovely private room.
Stellan looks so peaceful and cozy under that adorable blanket, by the way ... What a sweetie pie :)
Continuing to pray!
what kind of specialists are you looking for a second opinion from? i have connections, including johns hopkins where i'm treated...
- michelle
Look at that precious boy!!
Praying for you all!
praying for wisdom for the doctors and peace for you all!
praying for you, still.
Nothing I can say but still praying. I am so sorry this has been such a hard time. Maybe a fresh set of eyes is just what Stellan needs. Praying a second opinion brings new hope and new ideas!!!!
Still Praying for you all in Maine....
I'm really bummed to hear he keeps going back and forth into SVT, but thankful he's able to come out on his own. I hope the second opinion can be more helpful. I will definitely add that aspect to my praying over Stellan.
Hey, glad your massage rocked! I'm sure it really helped relieve some tired muscles!
He looks so sweet and peaceful. Praying God's wisdom as you seek out a second opinion.
Blessings!
A lazy Saturday for us too, we are still in prayer for sweet Stellan. The room doesn't look too bad! Sorry about the leggings...
That is a darling blanket on your sweet sleepy babe. We're still praying...often and hard.
praying the bouts of SVT end and that you, PC and all medical perssonel have wisdom seeking second opinions!!!
Ruthie
wow... how nice to have windows and a space all to yourselves! We will be praying for the wisdom of God to shin on Stellan's Dr's as they work to find the best solution for his SVT.
Look for an email from me with Stellan's name at the Final Four!
Still praying...
Hugs,
Amanda
Still praying. Hang in there, Mama!
will be praying for your requests. Bummer about the baby legs, he looked pretty cute with his strippy legs!
Sorry things are swinging back SVT:) But gald you got your own romm:) Still praying that that little stubburn heart is healed....SOON!
Still praying! I was so happy to see Stellans video on your last post! It was sooo great! You are awesome!! :)
Hang in there. Don't get discouraged. There is every reason to think Stellan will eventually be weaned off.
Oh No! I loved the striped leggings! Hang in there... you will know what to do and when to do it. Wisdom will be provided I'm sure!
And a massage? That's great! MckMama definately needs and deserves it. In our thoughts as always!
I am on the specific prayer request! You are always on my mind and in my heart.
xox
I have a pair of white/light blue herringbone pattern BabyLegs that are brand new. I got a great deal on them and intended to give them to somebody. I guess Stellan is going to be the recipient! I'll try to get them mailed on Monday, or maybe I can just bring them to Children's tomorrow if I have time.
Jenna Polzin
marjenr@bethel.edu
Praying especially for this 2nd opinion and that there's something out there that no one so far has come up with that can stop the SVT and allow him to go onto oral meds.
God Bless
Poor baby, not getting a break! We live near philly (I know so far away from you...) Childrens hospital, Presbyterian, and university of penn...saved my husbands life twice...I cant say anymore then that
Blessings,
Maire
Hello,
I'm so sorry your family is going through this difficult time. Looking for second opinions adds but one more level of uncertainty when all you feel is uncertainty.
In your search, please consider looking into the hospital where I am a pediatric nurse practitioner; The Children's Hospital of Philadelphia (CHOP). It's the #1 ranked children's hospital in the US, and has been for years. The cardiology program is outstanding. This is a hospital where the uncommon is all too common. www.chop.edu
Keeping your family in my prayers,
Noelle
Our prayers still go with you! May our Lord bless you guys.
Continuing to pray. I think a second opinion is always a good thing--you're doing a great job with all of this, MckMama. Keep relying on God's strength!
Oh sweet Stellan. You look adorable.
I am so glad you are seeking some second opinions elsewhere. When it comes to these little heart kiddos we have to do what's very best for them.
I agree that CHOP is a great place as well as Boston. Both have amazing CICU's.
So sorry about the leggins. Rhett's lost many a pair in the hospital, as well as blankies.
Keeping you in our thoughts and prayers.
((HUGS))
Keeping your family in our prayers.
I LOVE that blanket on Stellan!!! It is sooooooooo cute and looks soooooooo snuggly!!! I would love to know where you got it.
I am still praying for you guys!!!
-Lauren
Here's another prayer for you (and the doctors)!
love the blanket and he is such an angel baby! I pray for the knowledge of one dr to be sent your way to change this all so you can have your sweet baby back in your home sweet home soon. I am sure it is very frustrating living life so many days away from the other Mckmunchkins and I pray for careful speed. anyway always with you .. love you girl!
Our peds cardiologist sent us to Dr Constantine Mavroudis who is now at Cleveland Heart Clinic. He was fabulous. Saved my son's life. I have several friends who have used docs at CHOP as well. Our prayers to you as you seek knowledge.
Kara
Praying for wisdom and comfort for all of you...
You're right! Your new friend Ronica is super sweet! I am glad God sent you her to head this up!
Tell Stellan that Jude said he's welcome to borrow his babylegs, but they're just blue and light blue stripes:-)
We are praying ever harder for you guys to have wisdom as you seek out the second opinion and that God will send a doctor with special wisdom regarding Stellan's battle. And, that God will lift you above survival mode with a strength that you have never experienced.
I"ll pray for you as you look elsewhere for 2nd opinons. I spent the last two days speaking with every single heart transplant facility in the NATION getting opinions. Seriously... you will learn more than you ever thought possible by asking opinions from other Dr.'s and hospitals!
I pray for you guidance. The lord will help you with this decision.
Andrea
HUGS for Stellan. You should bring him to Denver Children's. Because I want to see a cute Stellan and because I think we could do a good job getting him fixed up. Wishing you all the best though with whatever you decide.
Yah!I am within the first 50 comments! Still praying for Stellan. Hope there is fewer STV episodes from now on, or better yet, none!
Hang in there! His blanket is so cute! Will be praying about that second opinion! Love to you and Stellan! I can't wait to hug you both on the cruise!
Hang in there! His blanket is so cute! Will be praying about that second opinion! Love to you and Stellan! I can't wait to hug you both on the cruise!
hugs!!
Sweetest Stellan.
Son of God.
Still praying in PA/
Kathy B.
Praying that you will get the right second opinion. I know University of Michigan is wonderful for tricky heart patients too.
Where did you get Stellan's ADORABLE blanket! Your tweets about getting random pieces of clothing bring back memories of my time in the hospital too! :) Brings some humor to a hard time.
Blessings,
Jenny in Fowler, IN
It's so great to see him sleeping.
I'm glad you're seeking second opinions. That's wise.
Hey MckMama- In case you still read all your comments, I wanted to let you know that we take our little one to Dr. Hirsch at Cincinnati Children's Hospital... Dr. Hirsch and his staff are incredible. We have had WONDERFUL experiences at this hospital.
Just wanted to recommend someone for a second opinion if you wanted recommendations.
Either way- I am praying for you, Stellan, and your family on a multiple time daily basis.
Feel free to contact me personally if you want to hear more about Dr. Hirsch. If you e-mail me I will return with my phone number.
petersonclan at momys dot net .
Second opinions are bery, bery good! Esp when combined with prayer!
Barbara
His blanket looks like tasty frosting.
Praying for Wisdom for you and the doctors.
I just picked up some babylegs for my little guy today...wish you were close enough for me to drop some off to you!
Sick or not... he is so darn cute:) I'm praying for you and I hope you got your legging back!
what a sweet picture of stellan! love the blanket!
i hope you can get some more answers with a second opinion. praying for that now...
Our family is praying for your little one.
I have a friend who had little girl last fall, she was born early, had heart problems and had a temporary pacemaker put in at 4 days old, when she got up to 4.5# they put a more permanent pacemaker in.....at Mpls. Children's hospital. So, why can't they do that for Stellan?
Our prayers are with you, we know what it is like sitting in PICU, if you remember our grandson Christopher spent a LOT of time at St. Paul's Childrens back in 1997-2001.
Vicki
I'll be praying for wisdom for those doctors..I'm assuming they'll be coming from the U of M. I think of you often!
Hello MckMama, from Cleveland, OH --
My name is Debbie and I've been following your blog for several months. I am so sorry to hear about little Stellan's heart issues.
Have been thinking about posting something for a couple of days, and now seems an appropriate time to do that, mainly because you mentioned 2nd opinions in your blog. I know that traveling anywhere from your home area would be a challenge. But, I also can tell you that the Cleveland Clinic is ranked #1 in heart care for the entire country!
My prayer, of course, is that your little son's heart will heal, and that you won't need to travel, but if you do, and you were to decide to come to NE Ohio, I'd be glad to help out in any way I can! Hang in there!
Blessings, Debbie
dlikinsfowler@oh.rr.com
I was thinking that the soft and satiny blanket I'm seeing overtop Stellan makes him look snug as a bug in a rug.
Perchance I shall snag myself one too.
Tiff
Still praying hard for Stellan
praying for wisdom.
We pray that you find a great doctor to receive a second opinion from. Our cardiologists here at Rainbow Babies are great.
We are originally from Texas however and have nothing but praises about Cook Childrens Hospital in Fort Worth. Dr. Benjamin Siu (ped. cardiologist) is the most passionate, Godly, humble and sincere physician I have ever been blessed to meet. Best of luck in your search.
We continue to lift your family up in prayer.
Praying for Sweet Stellan and those doctors who are trying to help him. Also praying for that second opinion. Hang in there MckMama. Love and prayers to you all!
~Elyse~
THAT is what I love about you Mckmama...always looking to the future....How special is that and how special are you! The cruise sounds great, and you may just see our whole Clan...eeeeh...or you may run...giggle..Love the updates..always praying..
Love to you and your sweet family. The seven weeks I spent with baby Angel at UCLA Mattel's Children's Hospital in L.A. were amazing. You know her struggle, however, the care she received was top notch. I know the head of the unit pretty well, let me know if the West coast is an option. While we were there, two patients from Japan were transferred in as well as five others from other facilities. You could stay with us. Love from Cindy in California p.s. I mailed Stellan's Disneyland hat out yesterday with some adorable bright Gap socks !
We continue to pray for you and Stellan!
♥
Praying still.
He looks so peaceful. How is baby boy #1 doing? Hoping all is better for him.
Praying for medical direction. Little boy needs something. :)
Glad you guys have windows now! Praying for you all. And maybe Babylegs will find you out as the people at Miracle Blanket did!
Too bad about the leggings because they are totally and completely adorable!
Praying for wisdom for his current doctors and the new ones!
So precious! Stellan looks so sweet all tucked in his blanket.
Still praying !!!
Don't know who your cardiologist are seeking second opinions from, but Dr. Fish is an arrhythmia expert at Vanderbilt Children's Hospital here in Nashville, TN. They might consult with him. Just a thought. Praying for you all!
Sarah
Although his new room looks pretty nice, I can't wait until the day he gets to move "back home" In the meantime, it looks like things are getting pretty cozy there!! Love that blanket!!
Thank you for letting us to know how to pray...
babyleggless is just sad...new room, though, is good. and you guys are always in our prayers...go baby stellan!
We are still lifting Stellan up in prayers.
Funny how hospital laundry can be annoying ... I lost my favorite pillow when giving birth to my second child - despite putting it in a bright-colored case like they said if you brought your own. You wouldn't think striped babylegs would blend in, would you?
Sounds like you are getting back to your 'old' self again! Stellan is so peaceful! Praying for you as always
so glad that he is getting rest, and I am also glad you got a massage! I know you needed it. I will be praying hard for wisdom for the doctor. Love Stellan's snuggly blanket..I made one just like that for my nephew Saywer. sweet dreams and blessings from ga~erin
as always you are in my heart, thoughts and prayers. ((hugs))
Still praying!
Prayers for strength, wisdom, peace and most of all Stellan's heart to behave.
Hugs!!
I am still praying, and am so sorry that the SVT bouts are becoming more regular. We will pray for wisdom for all (2nd, 3rd...) opinons, and know God is good!
You and Stellan continue to be in my daily prayers. Praying for wisdom for his doctors, strength and peace for both Stellan you and the rest of your family!
I pray that the second opinions that you are getting will shed some light. God Bless!
Great to have very specific prayer requests to lift up to the One who already knows the answer. My 7 year old called me when he was out on his Daddy Date to inform me that my husband and he have decided that the next time we cash in our change jar we're going to use the money to come see Stellan. Lol, I didn't have the heart to tell him Stellan's mommy might not necessarily be ready for company to just drop in, lol. Praying, praying, praying (and apparently saving our coins too!) for Stellan.
You are doing a fantastic job keeping it together with all your unknown circumstances. I will pray you and husband have to wisdom to make the right decisions. I am also keeping your 3 other little ones in my prayers as I am sure this is such a new thing for them to try and understand. I'm super happy that Stellan has been coming out of the SVT on his own. He looks so beautiful and healthy...you'd just never know the struggle he's going through on the inside. We are all learning so much about this condition right along with you from your writings. Which by the way...you're a great story teller! Much love from my Minnesota family to yours!
:-) Kimberly in Maple Grove
MckMama - is that little blanket a custom design by Mimi? I was online trying to support you in any way possible (ahem...other than calling the hotel to try and pay for your room, donating to the fund, praying, spreading the word about Stellan to my prayer warriors, talking back and forth with Jess trying to see what more we can do) and I was looking at them online but it gives such a better view, for I am a visual person too, on the little man. He looks so peaceful. Also...I know you are not one to ask for things but I have some friends who want to send gift certificates (I gave them the list that I have) but is there any that you would like to have while you are in the hospital? Like somewhere that delivers or somoeone can run to Chipotle for you or something. Let us know...I am asking - you are not so please tell me anything that you would like to have while in the hospital with our...ahem I mean...your little man Stellan! :)
Loving you in Indiana...
Bobbi Beer
bobbi@beersconfectionary.com
OH NO! The Babylegs makes me SO sad. That is just awful. Can you find your flame ones?
Sweet Dreams tonight little Mcfamily. Rest up and get well. Prayers are being said and Hugs are being sent.
Please know, we love you guys! We are here for YOU!
Prayers for you
Jen~Ohio
Continuing to pray for your family!
Glad and grateful for the glorious gift of gorgeous gent getting-better. Glory to God!
Praying progress proceeds!
just found your blog...will pray for your beautiful baby boy and family every day. stay strong. you are amazing.
I know I posted this yesteday, but we are still so happy with the success our niece had at Akron Children's Hospital with Dr. Clark who has treated her through her SVT diagnosis at one month old until performing her cryoablation this week. Her SVT was initially very drug resistant and yet they were able to come up with a course of oral medication for her. I am still praying for the same outcome for your family...
Just wanted to let you know that we are still "taking Stellan with us" every day. My kids love having this new member to our family, and we're still thinking about you every day.
To view Stellan's tag just go here..
http://allysonlyonphotography.blogspot.com/search/label/Stellan
We'll be with you as long as it takes!
I want to go cruising so bad!! I can't wait to meet your little miracle...all of your little miracles and introduce you to ours!
Just popping in to let you know that we are praying so much for you all.
Your cruise sounds so wonderful - what an amazing experience that is going to be!
P.S. You shoul add "sailing the seas" to your title! ; )
P.P.S. Yay for Etsy, that site and the people supporting you - all wonderful...
good luck tomorrow. praying for your specific requests. and loving m on the etsy shop website... is she not the cutest thing,i just love her, and her curls ...wow. oh, and i cannot wait for the CRUISE!! HALLELUJAH!!
Love and prayers and lots of strength being sent to you and your FAMILY. Love you!!
--R
I read through some of the above comments and I agree about Cleveland and Pittsburgh. Both are great children's hospitals!
we are praying for baby stellan and his new bouts of svt...
God Bless
I am so thankful you are allowing a way for us to FREELY give to a donation fund to aid in ANYTHING your sweet family might need today or tomorrow! It is so hard to know how to help you when I live so far away! I am praying hard for this little guy and for your second opinion tomorrow! Oh, and I love the etsy.com setup!!!
Praying for wisdom for all who need it. Praying still for Stellan to get healthy, stay healthy and to come home!
My thoughts and prayers continue to be with your family! May you be given the strength you need to face every new day and every new challenge.
Praying for wisdom for everyone involved.
Added a couple of my items on etsy to help. =D
Second opinions
http://www.usnews.com/directories/hospitals/index_html/specialty+IHQCARD/
Oh my, not the BabyLegs in the wash! Hoping you are getting some much needed rest...still praying for that sweet little guy.
Sweet... hair bows and helping Baby Stellan- how I could I pass that up? Still praying for you guys! Hope tomorrow's meeting goes well.
Continuing to pray! I think it's so awesome the Etsy sellers are uniting in this way for your family. That is so awesome.
I will surely go check out Etsy! What better excuse to shop than to help such a special boy.
So sorry you're back on a roller coaster...was so hopeful that things were going to continue to improve. Prayers will surely continue for his health and your decisions ahead.
I will look at my stock of jewelry and add some items tomorrow!
I hope that our specific prayers bring quick responses! I am happy to hear that there have been shorter incidents of SVT. That has to be somewhat of a good sign.
Take care friend!
Oh me, I'm an Etsyholic , and for such a sweet cause, my own heart is bigger than my bank account! That is wonderful though that people can come together in such a way. I'm off to check it out. Lord, help my wallet! :)
I haven't had time to read through your updates today, but I am still praying.
Love that cutesie blanket b.t.w. with Stellan's name.
Praying for a restful night, both of you! And for the right decisions in his health care.
<3
Oh how I love that picture of him with the cozy blankie. Such a sweetie.
Prayers that he can get back into longer stretches of NSR and no more SVT!
Glad you enjoyed the massage! Sounds heavenly.
Prayers for a successful meeting with Cardiologists soon.
~Tracy
Hi!! I just got home and got caught up on what's going on with Stellan. Aaaahhhhhh! I'm so sorry!
I will definitely be praying for you being able to seek second opinions. May the Lord guide you to the right doctors/hospitals.
I'll also keep praying for you, your strength, Stellan, and the rest of your sweet family that have seriously become just like my own. :)
Have a good night sleep!! Hopefully you are at the Sheraton, again. Sami and I tried to work on that for you!
By the way, she is awesome!! Just had to tell you that. It's so obvious to see how you guys are friends! I love it!!
Love you,
Jess :)
P.S. took care of that e-mail for you!
Well I hate to even leave this I know you have way more important things going on and not sure if you are reading your comments right now, but I am not getting all of your Twitter updates and haven't been for a few days and wondering if anyone else has had any problems with it. Like I said its no biggie but I hate only seeing half of your converdations. Ha I am still praying for sweet Stellan and many blessings for your family.
Gina
Still praying! He's adorable.
I have been reading your blog for several months and pray for Stellan and your family..
My son was born with a congenital heart defect and we too have been down the long road of pregnancy not knowing what the future held for our son. We researched and chose to go to the C.S. Mott Childrens Hospital in Ann Arbor, Michigan. They are truly a phenomenal group doctors, surgeons & nurses! Don't know if this helps but Dr. Bove is a Godsend to us as he is one of the finest cardiothoracic surgeons on the planet..You may want to check them out and see what their experience is with SVT issues>>P.S. My son is 4 years old, running around with ONE ventricle! And has more energy than the Energizer bunny!
I am still praying! The picture of him sleeping with his blanket are so precious. Your family is awesome. Now to head on over to Etsy to check it out.
Wisdom it is....
Praying for your precious baby and your whole family!
Praying as you seek a second opinion. Praying that God sends the perfect Dr's. for Stellan. Praying for no more SVT incidents. Praying that he continues to get rest (you as well).
Praying this is a better week.Hugs.
Still praying for you all.
still praying... vanderbilt children's hospital in nashville, tn, has excellent peds. cardiologists. grew up there. worked there. recommend. brilliant minds. worth a phone call, if they'll do it.
I'm not sure where you're looking to for second opinions, but the Arkansas Children's Hosptial is exceptional. ABC did a series on their heart unit and Dr. Drummond Webb a few years ago. The Dr. died a year or two after the series, but he pioneered many things at that hospital before that. I know that's a long way from home, but just thought I would throw that out there. Praying for you!
Are you in DC??? if you are, I have some contacts there that may be helpful to you! I can not imagine your family's pain...especially the mommy's pain, She who can kiss all owies away, can not kiss this one away. My heart is with you, I know you feel it.
J
Etsy sellers? I'm IN!
www.mybluejeanbaby.etsy.com
Sending love and good thoughts your way!
My sweet baby girl was born with a serious heart defect and her doc's at Duke are incredible.
Praying for a peace for you and family that surpassess all understanding as well as wisdom for your docs.
My baby girl, Hutton, had a 0 percent chance of living. Different heart issues. The only place that would TRY to help her was CHOP- Philadelphia. We live in Tennessee. We LOVE it there. Its the number 1 children's hospital in the US. HUGE cardiac floor. Its worth checking out.
Praying for sweet Stellan! Love ya'll!
Jill Johnson
You're always on my mind - praying hard for sweet Stellan. BTW, that blanket is gorgeous!!!
so wonderful people are gifting you and your family.
wonder if some other moms of very sick babies at the hospital could use hotel rooms if there are any leftover to give....just a thought.
sunday blessings!
Praying...
Just read your twitter update about meeting with the cardiologist for second opinion... praying that goes well for you and that he comes out of these bouts soon!
Praying for you and wisdom from the Doctors.
Hope the older boys are feeling better too.
I would recommend seeking a second opinion from Mayo Clinic.
praying for wisdom...
I see that you are already getting several referrals for your second opinion. I talked to our friend, Dr. Ben Siu (pronounced Sue) who is a ped cardiopogist at Cook Children's in Fort Worth, Texas. I told him about your case and he is interested in helping. He recommended that you talk to a ped electrophysioligist. (He has two here that he recommends.) He is friends with Dr. Baker who is an intensivist where you are. He did mention that Amiodarone can take 21 days to fully work because it takes a long time to bind. Please email me if you'd like any more info.
Becky
Fort Worth
I am so blessed to see so many people rallying around you all.
Praying, xoxo, Veronica in CA
Praying, praying and more praying!!! Hang in there. You are so very brave.
The pictures of Stellan are so precious.
Dear Lord, please heal this little boy.
Praying for you and Stellan!
Still praying in N.C. for Stellan. So glad you have decided to get a second opinion. Just praying the connection is made with the right doctor.There is really a well known heart doctor at Pitt Memorial Hospital in Greenville, N.C., his name is Dr. Chitwood. Good luck and hope you get some answers.
Still praying in Connecticut! Hoping all works out with the second opinion, I've been trying to keep up with your tweets... Hoping Stellan was able to break himself out of this latest SVT episode without additional medical intervention of any kind.
MckMama,
Hang in there!! Still praying for Stellan, you and the family.
I know when your at the Children's hospital you are on "THEIR" time and it can be so frustrating. I agree with a 2nd opinion (not that my opinion matters -lol) I will just continue to pray.
Hearts and Hugs
Marie
Happy Palm Sunday, kiddo! God did some freaking amazing stuff over "this" next week a bit ago. Maybe this is your week to experience some knock-your-pants-off-wicked-amazing physical healing too. But even if not, God's incredible in you--and in your mama.
My prayers this morning are for healing and continued strength and endurance for you and your mama and your family. ...and that the freaking cardiologist shows up.
Amanda
Good morning. Praying that you will be able to meet with the cardiologist and get a second opinion. Continuing to pray for you all here in San Diego. *hug*
Sad about the frequent SVT :(
Hope that goes away FAST!!!
Praying hard for Super Stellan and for the wisdom you seek and deserve!!!
Always in my heart and prayers,
C.
Have courage. The docs are people, too, even though it doesn't feel like it sometimes. You can do it!!!
Praying for you constantly.
Jamie
Nashville
Praying for the knowledge given to the doctors by God. You can do this, because God will give the strength to do so.
Covering you all in Prayer.
Kerry
Michigan
Hi, I was browsing the topic of babywearing and came across your blog. I just decided to do this myself when our baby is born in June/July. I am not getting a lot of support from friends around me but would love to hear any advice you might have to offer!
Positive thoughts and hugs are coming your way!
I LOVE Stellan's blanket.
Praying, praying, praying for that sweet baby boy,his strong mama, and the doctors who are trying to figure out what is best.
sending unceasing silent supplications for sweet Stellan still...
Another SVT mom here. I'm also in Ft. Worth and my daughter was very difficult to convert after her birth. We saw electrophysiologist Dr. Paul Gillette at Cook Children's and I recommend him highly. My daughter was on amiodarone and digoxin after trying several other things and a 13 day hospital stay. Thankfully, she eventually grew out of the SVT. Praying for hope, wisdom and healing for your family, the doctors and little Stellan.
Stellan's Birthday Buddy and Heart Sister, Maia, is praying along with her family! Oh, how I wish we could join you guys on the cruise but financially we are going to have to wait on that one. Hopefully one day these two can meet! Take Care and know that are knees are very dirty on Stellan and your behalf!
at our worship service this morning, "How Great Is Our God" was sang...and prayers were sent up for you and your family. goosebumps were felt, and Baby Stellan's sweet face was my vision as i closed my eyes and prayed for your sweet family.
I can read from your Tweets that your family is struggling more than ever now. I'm so sorry to hear that your other little ones have been added to your list of worries. I am, however, so thankful that your meeting with the cardiologist went well and that you've been able to advocate strongly for Stellan. I'm praying for you all--for wisdom, for peace, for wellness, and for strength.
--Kelley in GA (queenkelley.com)
I am reading your Twitter updates...why do ALL your kids have to get sick? That is just not fair. How yucky this day must be. At least your little Stellan is feeling better. Hang in there, and I am continually thinking of you all.
Rota Virus is awful. My middle son had it when he was 2. We had to take him to the ER twice or IV fluids. My third son has has been immunized for it. There wasn't a shot for it back when my middle son was born. It is one of those things that you do not want your child to get and have to get over. I know you don't like to immunize. I think this one is worth it though. Not fun at all.....or anyone! I pray that Stellan is getting better. Katie
Just read your tweets about your little ones. Wow! We are praying for you! I think Satan is attacking your family, because of the faith you are showing through Stellan's illness. You are shining the light of Jesus, and you know he doesn't like that.
Hang in there...God will not forsake you!
Just read all of your tweets, praying now for ALL of your MSC!
Still saying many prayers for your beautiful baby Stellan. He's adorable. P&PT's, I hope he's better soon!
I've been following your blog for weeks now & continue to pray for you & your sweet baby boy. I received this prayer at the end of my devotion today & kept thinking of you.
Dear Lord, please speak to my heart in my darkest valleys. I need to remember that You are the truth, and not my circumstances. Help me have the strength to do the right things, and not stay planted in misery during a time of difficulty. I long to be out of this valley. But I will praise You now at the bottom and I will praise You from the mountain top – for You are worthy! In Jesus' Name, Amen.
Wow you are having alot of stuff thrown at you right now...but you know God only gives you what you can handle! What a wonderful compliment! Right? You are I think the strongest woman I have ever "met" ;)!
Praying for all of you! Bless your sweet little hearts!
Krystal in TX
Praying in South Dakota...
I am going to comment on this one as well, in hopes you see it since it had fewer posts than the one above. I am doing this in hope that you contact me about Stellan. My son, Eli went through a sever case of SVT as well. We were at Children's hospital in Washington DC in the Cardiac ICU for 2 weeks, and tried a few different medications until the doctors found the combination that worked. Reading all the medical terms you have written bring back so many vivid memories of our time spent in the hospital. I would love to speak to you about the doctors there and what they did to save my son. They are amazing!
Please feel free to call me at 410.551.5335 or email me at elyse.knight@gmail.com
I will keep Stellan in my prayers!
Love,
Elyse
That's so awesome that Etsy sellers are supporting you! I similarly supported the Cora Playground through Etsy purchases. I was thrilled to see one of my favourite sellers - Colby Lane Designs who does these really cute bibs, supporting you - I bought a bunch that she had designated for Stellan!
I make baby leggings.. if you get me your e-mail address I can e-mail you with some color options, I have a lot of stock right now and am excited that I might be able to do something for you guys!
Unfortunately I know exactly what you are going through and it is heart and gut wrenching.... seeing your little one go in and out of those episodes... heart rate upwards of 260... hearing the monitor scream with that dreaded alarm... the Adenocene through the PIC line or the vagal manuvers, ICE to the face or legs to the chest, to break the episode. I am so sorry that you are going through what we have been through. On a bright note our now 8 month old daughter is home and epiosode free since she was 4 weeks old. I HIGHLY recomend DUKE Children's Hospital in Durham, NC if y ou are looking for a 2nd opinion. (http://www.dukechildrens.org/services/cardiology) Dr. Kanter (Ronald J. Kanter, MD)(Electro-physiologist) is world renounded and is the best in the world in diagnosing and treating SVT in children. They have an excelent Pediatric Cardiology team that truely listens to all you concerns. I highly recomend Dr. Campbell (Michael J. Campbell, MD
). Please email me if you want to chat about anything. My thoughts and prayers are with you and you family.
~Erin Joy
(Erin_C_Joy@yahoo.com)
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