Linus's last 2 echos have shown that his mitral valve has severe regurgitation. It lets just as much blood flow backwards as it does forwards. He has developed pulmonary hypertension as a result. Linus has been difficult to keep stable since he crashed on the 11th, but his weekend it got worse. Despite the fact that he is on a minimum dilution protocol and 4 diuretics, his body started taking on fluid again. Fluid is practically pouring into his lungs. Now his kidneys are starting to show the effects of the medications. We're losing ground. Tomorrow morning he will go back into surgery and have his ruined mitral valve replaced by a mechanical one. This procedure is very dangerous. It has a 20-36% mortality rate in children under 5 years. The fact that he is under 6 months puts him at the top of that statistic. He will have to be on blood thinners for the rest of his life so that clots do not form on his new hardware. This in itself is dangerous. It is very difficult to regulate blood thinners in an infant. They grow so quickly and have a tendency to spit up and "lose" some of their dose. Too much and they can bleed out, too little and they can develop fatal clots.
Right now I'm mostly numb. A few days ago when I felt the plan shifting from "lets try to get him as healthy as possible so we can avoid surgery" to "lets get him as healthy as possible so he does well in surgery" I had a good, long, thorough breakdown. I think I cried for 4 straight hours. It was a great pressure release. I'm still scared to death, but I've come to accept that we are out of alternatives.
A diagram on how the replacement is done.
His new valve will look like this.
125 comments:
i am just stunned at how much you all have been through already. you are in my thoughts often.
Praying for a successful surgery tomorrow morning.
We are thinking of you constantly and sending you our thoughts, prayers, love, and strength.
You have many,many people in awe of your strength- and Linus's as well. We pray- continuously- and send lots of love!
Continuing to pray for a successful surgery for Linus. Thinking of you often. Thank you for keeping us updated - so many people are thinking about all of you.
Praying for a very successful surgery tomorrow. Hugs to you all!
We have been following your story since you were barely pregnanta nd we were trying to conceive ourselves. I am now reading this update with my 7 week old twins on my lap and my heart aches for you to imagine what you are going through.
We will be sending healing waves to your little one and strength to you and your love.
In sisterhood,
Claudine, Val, and little Charlie and Chloe
Praying for a miracle....
We're praying with all our might for you guys.
I am thinking about you constantly. I send your whole family my most positive energy and warmest thoughts. You are all fighters, and you are surrounded with love.
Praying for Linus and his doctors to stay strong.
Sending lots of love your way.
Sending you and Linus lots of good thoughts for a very succeessful surgery.
Praying for you all. Much love and strength to you...
Ack!! Babies should NOT have hardware!! Thinking of you all! He WILL pull through ALL of this!!
I am afraid for Linus and for you and can only imagine how you must be feeling. I don't know how to strength to deal with this kind of situation comes from, but I know from experience that it somehow miracuously appears and then leaves you shaking with disbelief when the ordeal has passed. If autopilot is what you're on right now, just go with it. You will be a good advocate for your child. That's clear from reading your posts. Thinking of you all and will be holding you guys in the light, particularly tomorrow morning.
Delurking to wish you all strength and send my prayers.
I'm so sorry it got to this point so fast. sending all the positive thoughts I have to TX tomorrow morning for his surgery. Much love to all of you.
I stumbled across your blog almost a year ago and while we don't "know" you, your family has been in our hearts and prayers throughout all of this.
Much love is being sent your way...
My best friend had this surgery 30 years ago. She spent a long time in the ICU afterwards, but she is happy, healthy, and getting married at the end of the summer. Miracles do happen and I believe in yours!
I want to write you something inspirational and wise - something that will help you today and tomorrow and keep your spirits as high as they can be in this situation, but my words seem to fail me. Please know that I'm thinking of you constantly and sending as many good thoughts as I can your way.
I'll be lighting a candle for you tomorrow morning - thanks for the updates
I found your blog through the Day of Prayer on FB. Prayers for your family, the doctors, and especially Linus' heart.
Praying for you!
I cannot believe the tremendous amount you have all been through already. I pray for you all that this surgery will be what Linus needs to make a huge recovery.
Thinking and praying for you all! Linus is a strong little man and he will pull through and suprise everyone!
I just hope he's in the 70% of children than make it through and that he will then finally be a healthier little baby. You guys deserve a break. Hang in there. I am thinking of your little guy and hoping things go smoothly.
-Shirin
Im praying you and your family. Linus is a fighter stronger than most adults I know. A million hugs are sent your way along with hope and faith )))))))))))))))))
I don't usually pray but right now you bet I am, as hard as I possibly can. Sending you all the healthy thoughts and warm wishes I can muster.
Sending you all LOVE.
I am sending to you all the deepest of love and thoughts. I will pray harder than I have ever prayed in my life for both of you and your beautiful child.
Praying for Linus to have a successful surgery tomorrow. <3
Praying for tomorrow. My 2 year old had his mitral valve replaced last summer. It was an awful, horrendous, terrifying time. But he's healthy and beautiful and silly and active now - be courageous knowing that a good outcome IS possible. We're still doing the blood thinner dance, and while terrifying at first, we're learning it's not nearly as scary as we had imagined.
Please contact me if there's anything ANYTHING I can share from my experience.
I don't have anything to add that hasn't been said, but my wife and I found your blog about a month ago when looking for queer TTC blogs, and I've been praying for Linus ever since. I'll be thinking of him tomorrow AM.
I am thinking about you, Linus, Trina and the boys. Sending positive vibes your way and I will light a candle for him tonight. Wishing you and yours the best in this difficult time.
Praying for you! I've been away from your blog for a long time but I used to read it when you were newly pregnant.
My husband and I are praying hard for Linus, and we will up the frequency and intensity of our prayers during this critical time. Linus is an inspiration and a true fighter, and he has touched our hearts beyond what words can express.
I'll be thinking of little Linus and his moms tomorrow morning. Words can't express how much we are all pulling for you over here. Sending you love and strength, especially over the next 24 hours.
Dear Heavenly Father, I come before you with a humble heart. I pray for a healing, miraculous touch for Linus, Lord. I pray for strength and patience for his family. You said, Lord, that you would never leave us or forsake us. I believe that you are there with Linus 24/7. Touching his little mind, spirit and heart.
In Jesus' precious name, Amen.
Your family has been in my thoughts an prayers and will continue to be. Sending you love, prayers, a shoulder to cry on and strength.
Jen Foster sent me a link to your blog. We will be praying and have contacted our favorite prayer warriors to join us!
sending all the love and good wishes possible to Linus and your family. Much love and strength to you -
I have been following the joy and the struggles following the arrival of your three boys, who are SO VERY adorable by the way.
I am so sorry that Linus has had the lion's share of the struggle. I hope that he roars right through this and is all smiles again soon. My heart aches for the terror you and Trina are going through.
xo Mulberry
My mom had that same surgery, and it was very successful. The difference was about 50 years and a grown up body. It's amazing at what doctors (teams of them) can do, though.
I don't pray, but I will tomorrow. A lot.
We're all praying for you. Much love, Robbie.
We'll be thinking of you tomorrow...
-S & J
Hugs, and a little finger for anyone to hold onto. With love and hope from Belgium
Sending you many positive thoughts and wishes for a successful surgery tomorrow.
Praying and thinking of you all tomorrow xxxx
wow, sorry i have been MIA for a while. I know that everything will turn out ok, I am lighting a candle for him right now.
My thoughts are continuously with your family and Linus' doctors and other medical support. But most especially with your sweet, precious son. I wait for every update and thank you for sharing with us.
Prayers abounding through the night and into the morning for Linus, the mothers who love him, his brothers, and the hands of the surgeons who mend his heart.
Samantha & Anne
May you find peace in the storm. Love to Linus and his family. <3
I think I pray for your little one more than my own, but yours needs it more than mine right now. May God keep you all strong! You are an amazing family - truly an inspiration of motherhood and marriage!
We are all sending out meaningful vibes for Linus.
We are praying for Linus and keeping all of you in our thoughts.
Kim and I are aching for you and your beautiful family. Just like everyone else, you and your family, all three of your adorable boys are in our thoughts and prayers. I wish we could be there with ya'll tomorrow to hug you and just be there with you/for you as you wait.
May GOD be with Linus and his "team" tomorrow. Your little man is stronger than any child should have to ever be.
You mommies are the epitomy of strength for all that you have endured so far and the minutes/hours/days ahead. Breathe when you can, cry or scream if it helps. Simon and Dexter will be sending Linus that triplet strength. Multiples seem to have it like that.
Linus is in our prayers as are Dexter and Simon and the two of ya'll. Thank you for sharing with us and letting us be a part of your family. Thank you to your incredible families, friends, co-workers for being there for your entire family. May GOD bless the doctors.
Prayers, Hugs and Love from Virginia
-M & Kim (and Gracie)
we are thinking of you all and sending strong healing thoughts to your little fighter Linus!!!
My heart is aching for you and your family. Lots of prayers for baby Linus, the doctors, and you mommies will be lifted. I also have triplet boys (8months old). One of ours has endured 5 surgeries and is waiting on another one soon. I know how hard it is to be away from your other two babies. Please know there are many many people praying for you all!
Our thoughts and prayers are with you and your beautiful family. Go Team Linus!!!
Prayers are being said for Little Linus and both of you!
I've been following your blog since your pregnancy. I am in awe of your family's strenght as well as Linus' will to live. I will be praying for you and asking others to do the same. Keep your faith and strenght.
we are sending you all our good thoughts and strength. we're totally on team linus.
We have been following your blog for some time. Every day we check on Linus and cry for you guys. We have you guys and the boys on our minds. Sending lots of positive energy your way!
I probably can't say anything that hasn't already been said but...Jo and I are keeping you in our prayers, going to give blood, and sending a donation. It seems so small a thing to do. When really we would like to wrap you all in loving arms and tell you it will be alright. Sending our warm fuzzies and prayers for a successful surgery tomorrow.
I was turned onto your blog by a friend with triplets...I am praying for your sweet, sweet baby. Stay strong, Linus and may God protect you.
Thoughts and love for Linus and family.
I sent my wishes into the world for you. I hope the very best for your sweet boy and will be thinking of him and your family tomorrow.
I have been following your journey and thinking of little Linus. Sending positive thoughts for a successful operation tomorrow.
Sending healing thoughts your way. ((HUGS))
My words are inadequate to express the emotions I feel for you and your family. My prayers will be for Linus as he goes through his biggest challenge yet. May you and Trina find solace and comfort in knowing that you have a huge community supporting the health of your dear son. Peace to you all and hugs to Simon and Dexter too.
We'll be praying all morning for Linus his mommy and his mama. Also for the surgeons, doctors and nurses who are looking after him.
lighting a candle for Linus right now.
Thought of Linus all night last night as I lay in bed. Thoughts and Prayers go out to you this morning.
De-lurking to wish you luck today. Your family is in my thoughts and little Linus in my prayers.
I am praying hard for Linus and your whole family today. Thinking about you all....
Thinking of you and praying for a successful surgery and a break for the little man.
Pray that God is holding your baby, and all of your family, in his hands today.
There are posts abound today praying for Linus, including my own. We are ALL pulling for him!!
Sending you so many hugs, good vibes, thoughts and prayers today. xoxo
Praying for your baby Linus.
Hugs,
Nina
Praying for little Linus and your whole family! He is a fighter!
I am going to light a candle this evening and put it in our window. I have so much hope that he is going to become well soon.
Good luck, and stay strong for that gorgeous little boy!
Thoughts and prayers with you from a devoted reader in CA. Thanks for keeping us updated.
*SIGH* I am amazed by you and Trina's ability to carry on. But I also know that the strength comes from being moms. It is what we do. Linus, you, Trina, your entire family and support system are in my thoughts today.
My thoughts and prayers are with you and your family....Linus is a fighter and today's surgery will prove that! Keep up the fight Linus!
I'm sending love and healing energy today and thinking of you so much.
could you email me. skateretnies15@aol.com. i could talk to u about what ur sons going through.. i have the exact same things he has. please.
My prayers and thoughts are with you!!! You can do this, Linus!!
Dear Robbie, Trina, Dexter, Simon and especially Linus and his doctors and God or Goddess. Please, make healing happen, let recovery begin and hope return for this beautiful family. As a mom of a five month old girl my heart breaks for your pain. Linus' sweet pictures when he is doing well have such a look of a five month old funny chunky adorable boy just ready to rock and roll, and the ones of him so sick just break my heart. Something about mothers' feeling the pain of the whole world's children I think, and wanting to keep them all from harm.
I'm awaiting your next post with hope for good news. You are all in my heart and prayers. ((hugs))
Thinking of all of you today. We send all our love that everything gas gone well so far.
There are many many people praying for you all today. Linus defy the odds and get better little man. Much love from the internet world.
Hoping that all is going well - sending tons of love Linus' way!
Grace and peace to you. You will be in my prayers continually. Knowledge and wisdom for the doctors, peace and courage to you and yours.
If (like me) you're reading comments looking for an update, you may want to check the Pray for Linus's surgery facebook page (http://www.facebook.com/event.php?eid=153227271404147&ref=ts). There are some updates there.
I'm praying for you, Linus!
21 Yet this I call to mind and therefore I have hope:
22 Because of the LORD’s great love we are not consumed, for his compassions never fail.
23 They are new every morning; great is your faithfulness.
24 I say to myself, “The LORD is my portion; therefore I will wait for him.”
25 The LORD is good to those whose hope is in him, to the one who seeks him;
26 it is good to wait quietly for the salvation of the LORD.
Lamentations 3:21-26
I stumbled upon your blog via boomba.com
I lit candles for your beautiful family and for the little warrior prince. May their light shine over the ocean directly into your hearts
He has the heart of a lion, your son.((((Hugs offered))))
With all my power and with all my love I am sending healing vibes and my prayers to each and everyone in your family. Me and my family will wrap you in a net of love.
Thinking about you and your family today. Praying for Linus to be strong!
The story of Linus and your family is so inspirational. He is quite the fighter and we are praying for ALL of you including the doctors, nurses and surgeons tending to your son.
Peace and love - Rose
Anxious to hear how surgery went. Spent a LOT of time throughout the day praying for your precious boy. Your little angels are exactly one week older than my baby girl and I canNOT imagine going through all that your family has gone through in the past few months.
Thinking about all five of you and your family and friends today. I hope that you're surrounded by strength and support and that the surgery went well.
Thinking about you!
We would like to send our strongest wishes of strength and endurance to your whole family and of course to Linus. It is amazing how someone who has only been in this world for 5 months so far -has touched SO MANY LIVES.
Much love -
I am thinking of Linus and hope his surgery goes well. such a little boy to have to deal with so much. My heart goes out to you.
Take care. you are two fantastic mums.
Jeanette in Australia.
kim and m sent me... thinking of linus and sending positive, healing thoughts.
Oh I'm SOOOO grateful that the surgery was a success. Hoping his recovery is just as successful.
Still praying for your family.
Big relieved hugs.
Thinking about you.
Robbie and Trina, you are in my thoughts. I'm praying for the best for Linus and your family.
Aawww, I am so greatful and happy that the surgery went well. :D :D :D Can't wait to hear more!!
Now all you have to do is get better and stronger!!!!
I'm so so so happy to see the surgery went well! Still praying for all of you!
I've been reading your blog for a long time. I first heard about Linus on the baby center community page cause I also have a baby with CHD. Aortic Stenosis too actually. She's 7 months old now.
I want you to know that I'm thinking about you daily and prayed for a great surgery and for all of this to get resolved so you can take your baby home!!!!!
Lots of healing thoughts and love,
Thea
As always, thinking of and praying for your family.
i'm glad you were able to cry. sad that he has to have this surgery. hoping and praying there is sunshine in the days ahead... :)
love lots, allie b. :)
Thinking of you all, today and always.
Thinking of you all, today and always.
Thinking of you all and wish the very best for Linus tomorrow.
the little guy is in my thoughts and prayers. stay strong mommies.
I am so sorry that your baby has to go through this. I will be keeping your family and your beautiful boy in my prayers.
Praying for a speedy recovery for your little guy. Glad to hear that it went well!
Wonderful that it went so well! Hope the little guy has a quick recovery!
Sending you and all 3 of your babies lots of love.
You both are a source strength and inspiration. Your little Linus is such a strong fighter. I am praying God carries him through this battle.
I just found this through Bake One, Buy One and it immediately brought tears to my eyes. Why babies (and their families) should ever have to go through this is just beyond me. I'll be sending you all lots of prayers and well-wishing. <3
I read this post, and what it made me do (other than stop breathing for a second while I pondered how lucky the rest of us are) was to shut my laptop and go watch my healthy, nearly-three-year-old twins take a bath together. And I didn't take it for granted. No one should ever have to endure what you are, and I hope with all my heart that Linus recovers swiftly.
I literally just stumbled upon your blog. My heart goes out to you and your family. I can't imagine what you are going through. I pray the surgery was successful and that little Linus is doing well.
Hi. I've never commented before, but I've been a periodic reader for a while, and my wife has been a regular lurker since you were newly pregnant. Your family has been in our thoughts a lot recently, and we send hope and strength and healing to all of you.
we are adding our voices to the prayers for Linus!
I've been reading your blog daily since the beginning and my heart, my thoughts my prayers and all the healing fighting mojo I've got go to you both and Linus.
I would like to send a prayer square blanket... so if anyone knows an address I can send it to please let me know. alishaknits@gmail.com
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