Surgery Date Set for Seraph's Next Open Heart Surgery: August 30th

Angel & Seraph 11 days old
(minutes before Seraph's first open heart surgery)

Beautiful Rabbit (8yrs) holding Seraph & Angel 
the day we brought Seraph home from the 
hospital the first time (1 month old)

Angel & Seraph the night before Seraph's second
open heart surgery (4 months old)

Delightful Finch, Seraph, & Angel 2 months *before*
Seraph's third open heart surgery (3 years old)

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 Seraph's (Fontan) open heart surgery is scheduled for August 30th. We're planning on requesting a day of prayer and fasting for her to be held on the first Sunday in August. More details on that and the surgery later.

This should be her last surgery for 15+ years if all goes well.

Please keep her in your thoughts and prayers.

A Very Happy Echo

Seraph had a sedated echo cardiogram this week.  It's like an ultrasound on her heart.  They sedated her so she'd lay still long enough for them to get a good look at everything.

Seraph didn't mind being up at 6am.  I had to be up late to do her midnight feeding and then switch to pedialyte at 2am.  I was really tired.  Thank heavens Daddy was driving! Seraph loves driving.  She mostly watches out the window and kicks her feet.

Seraph liked the toys outside of xray.  She hated xray.  They make her sit still and mommy leaves!! I like to stand back by the computers so I can take a peek at her xray as it pops up on the screen.  Her xrays looked fantastic this time :)  yay!

 There was a computer in the examination room!  Seraph couldn't quite reach the keyboard...but some nice person had left the mouse on the floor for her to play with.

There was a LOT of waiting....and Daddy got lots of work done on his phone.  Thankfully, I had the iPad along to keep Seraph busy.  (I brought it to read a book while she was sedated, but once she saw it, she demanded her app-play time!)

 The nurse practitioner and the cardiologist were super smart - no lab coat today so Seraph had no negative reaction to them even when they listened to her heart and lungs. Seraph was congested from allergies, but they felt she was OK to be sedated.

 Seraph was very happy and very social...until the IV-team started putting on gloves. It was a HUGE warning signal for her. She cried immediately and looked around for a way to escape.  I used to offer to help hold her still.....but I just can't do it anymore. I figure she needs big hugs when they're done and that's my job.

 We almost left her favorite puppy under the chair, but the NP saw it.  I would've had to buy her a new one.  She loves her puppy that much!

 After the IV...we moved to the echo room.  I held her on my lap while they started sedating her.
Seraph was almost a year old before she decided to allow me to give her comfort via hugs and touching.  Before that she would just shove everyone away.  Now she wants me to hold her and give her love.  I never knew it was something to be grateful for....but I am ever so grateful she let me hold, comfort, and sooth her as the meds started kicking in. :) She is one tough cookie!

Recovery time was fast.  We had our chat with the cardiologist.  It was all good. Her heart function/xrays/valves...everything looks good.  We've set up a heart Cath in August.  Cardiologist is optimist about her next open heart surgery...and feels we'll be able to do it in August.
He also cut back on several of her meds.
It was crazy talking to him....because this was the first time that it was all good news. I feel better about her upcoming surgery.  I think she'll do well.

Here's a picture of Seraph the day after her echo:

They told me she would be cranky....boy were they right!  but she was also happy to be home.

Summertime for Seraph!!

Seraph visited her cardiologist this week.  He was optimistic.  (He is NEVER optimistic).

I think Seraph is entering a summer vacation period of her life.  If we can keep her from getting sick, she won't need to go to the hospital for a whole year!!  She needs to gain atleast 10 more lbs before they'll think about doing her third open heart surgery.  (She's 22 lbs and 20 months old now)  She's soooo close to walking on her own.  Soon we'll be chasing her all around the house.  She's even trying to figure out how to go up the stairs.  Still not much progress on overcoming her oral aversions long enough to eat.

Dr. Cardiology wants to see her again in 6 months.  He wants us to keep the blowby oxygen on her.  He wants to know if she gets sick - especially if it's something that will change her fluid intake/outtake balance like the flu.  Flu very, very bad.

We're still being careful for RSV/flu season.  Sexy Haqon and I are excited for this Summer.  Seraph will be able to walk!  Her twin cousins will be coming to visit!  We'll be able to take all the kids out to places like the zoo!  Haqon *might* even be able to convince me to take everyone on a family trip.

We've plans to live it up and party this Summer.....and I gotta say I am sooooooooooooooooo looking forward to it.


So, if you come to visit, don't bring a cold/sickness.  I wanna keep my baby home this year :)  Maybe I'll make one of those signs:  95 days with no ICU!!

Seraph Home

We don't have news from the cardiologist yet, but someone pointed out I forgot to mention Seraph is home. The heart cath went well. Her pulmonary veins look good. The surgeon was surprised they'd ever worried about them. (Thank you for all your prayers and fasting.)

Seraph came home early, early, early Saturday day morning. She has been cranky the last few days. She is still recovering...but with a bit of Tylenol, all her smiles come back. She's been kicking her legs a ton today. So, I think she's starting to feel better.

Her color looks better than before the surgery. The surgeon plugged up some extra blood vessels that she'd grown. Her heart and lungs are working more efficiently now.

Heart Catheterization

So, tomorrow's the big day :)

This video explains the heart cath procedure:

http://www.youtube.com/watch?v=xwh3tlFaVm0

Seraph is so happy tonight. She's playing with her alphabet town toy.

I'm excited to hear good news about her heart and pulmonary veins. I'm sad that she'll have to be intubated for the procedure. Silver lining: she's healthy enough to come off the vent. I pray she'll come off it quickly. She hates it sooo much.

I hope it doesn't hurt her voice. She's just coming into her own voice - cooing and trying out different baby sounds. Sometimes she sounds so much like Angel that I can't tell who "talked" unless I'm watching their mouths.

The actual procedure should start just before noon. Please keep her in your prayers. They want to keep her overnight to watch her breathing. If there are no complications, we'll have her back Saturday morning.

The surgeon will tell us his general impressions....but we really won't have results until they compare the videos and numbers to the last heart cath. In question: will she be able to have the 3rd heart surgery she'll need to survive (the Fontan). Are her pulmonary veins big enough to handle the extra pressures the Fontan would create? How are the pressures in her heart now? Is everything working as it should? Is her heart valve leaking more than normal?

etc etc....

It's a big day for my little sweetie - I hope she does well. Thank you for all your prayers and support. This is a big milestone in her journey - thanks for checking in on her progress.

*hugs*

Grumpy Days

Seraph is grumpy. She might be dehydrated. She sees her pediatrician tomorrow.

Other than that, she's doing well. Physical therapy went great today. We're practising putting her feet down when she's sitting (being held). We're also practising pushing up on her arms when she's on her tummy. She hates it, but she's getting a lot stronger.

August 28th is a big day - her heart cath. They'll look inside her heart and check pressures to see if she'll be eligible for the 3rd open heart surgery she'll need next year.

Sort of good news

They changed the settings on Seraph's vent. Instead of watching the pressures now they're watching the volume of air the vent gives her. This makes her do more of the work which gives her breathing muscles some much needed exercise. Different people do better with different settings. It seems Seraph does better with volume than pressure right now. This change is a good thing.

They also increased her oral narcotics. She still has trouble being calm when she comes off her sedation and muscle relaxants. The new idea is that with more narcotics and less muscle relaxants, she'll do better on the vent wean because she won't care as much about all the things poking her but will still be able to move. I don't know if this is a good thing or not. But, it seems better than rousing her, wondering why she's so agitated and then sedating her again and then wondering why she's so relaxed that she doesn't feel like breathing on her own.

She'll spend all of today getting used to her new balance of meds and resting.

Tomorrow they'll let her have a spontaneous trial to see if she's ready to be extubated.

...Not Again....

They've put Seraph on Lovenox again for clots. They found a clot in her chest in one of the veins coming back from her left arm. The clot blocked off enough of the vein that she grew collateral veins to go around it. That's NOT a good thing.

She also has a clot in her leg where her last PICC line was located. The doctors are not as worried about this clot. It will be broken down and reabsorbed by her body.

Lovenox is a blood thinner. It's a shot that's given twice a day. Seraph was on Lovenox July-November of last year. Haqon and I had to administer these shots when she was home. We celebrated wildly when she no longer needed them. We're both sad that she needs them again.

Today they turned off her paralytic to see if she'll breath with the vent instead of fighting it. Today and tomorrow will be spent slowly draining off excess fluids. She's scheduled for an echo on Thursday/Friday. The main valve in her heart is leaking more than normal. Cardiology attributes the change to her extra swelling.

She is still very sick. She's not getting worse--that's a good thing ;)

Baby Seraph's Cardiology Visit

Seraph did great on her Echo.  She's been approved for her GI (instestinal) surgeries.

She hated it--all the touching and the goopyness! She rolled, wiggled, swatted, screamed, and fought.  The tech thought we might have to sedate her to finish the test.  (Scared me!) Seraph's Cardiologist found her "spunkiness" encouraging.  If her heart function was too low, she wouldn't have had the energy to fight them off that much.  The echo (they did manage to see her heart) showed improved heart function :)

After the echo, they did an x-ray, EKG, and lab tests (drawing blood--eeeep)!  She was NOT happy.  ....except she still smiled whenever anyone talked to her.

I'm happy!

The surgeries will be done laproscopically.  No more food tube in her nose! (She'll still have her oxygen tube.) No more stress over Angel yanking out her NJ tube.  They'll be able to play together!!   Significantly less reflux! Happier, more mobile (yikes, but yay) baby :)!!!

Fasting for Baby Seraph

Please join us in fasting for Baby Seraph this Sunday (May 3rd 2009).

Seraph's heart has several defects.  She needs another open-heart surgery, the Fontan (this link explains all 3 heart surgeries, the fontan is the last one).  Last January, the cardiology team decided she is NOT a candidate for this 3rd heart surgery.  Her pulmonary veins are too small.  Pulmonary veins don't grow bigger.  They also decided she's not a candidate for some intestinal surgeries she needs. They didn't expect her to live this long.

The pulmonary veins are actually in her lungs.  In the picture, the pulmonary

 veins are the RED tree-branch-looking veins in the lungs.  The pulmonary veins bring oxygen-rich blood back to the heart.

See how the veins are bigger the closer they get to what would be the "trunk" of a tree?

Seraph has 3 pulmonary veins on her right side.  One of those is fine.  Another is probably OK.  The third is too small.  Picture a long, narrow tree trunk that doesn't have many smaller limbs branching off it.

That's fine for a tree, but Seraph's blood flows through these branches.  If the branch is too narrow, the blood can't flow through fast enough.  (The pulmonary veins on her left side are fine.)

The Fontan surgery will double the volume of blood that has to flow through those veins.

Seraph's body is slowly outgrowing her heart's ability to pump enough oxygen to it.  She'll need the Fontan to survive.

May 8th, Seraph will have an echocardiogram--a high res ultrasound on her heart.  They'll be looking specifically at her blood flow and her pulmonary veins. We're praying that her doctors will find something to reverse their decision and allow her to have the Fontan procedure.  This will put her back on their list of "treatable" patients.  We're also hoping they decide she's well enough to have the intestinal surgeries to ease her GERD (really bad reflux).

Baby Seraph has thrived at home.  Despite catching 2 colds, she's done so well.  She went from constant pain to rolling onto her tummy (thus her scar) on purpose! She's gained weight and started physical therapy.  She has 3 new teeth :)  She scoots and wiggles and rolls as far as her cords will let her.

She loves being with her family and especially with her twin sister, Baby Angel.  They are very close.  They shared the same sac in utero.  It's a miracle that their cords didn't knot and twist each other off before they were born.

Baby Seraph needs (another) miracle.  We want her to grow up with her twin sister...and have a long & happy life.  Thank you for fasting with us. Please keep Seraph in your thoughts and prayers.  

I hope to have good news for you soon :)

The Twins are Seven Months Old Today :)

Seraph is coming home on hospice care.  Sexy Haqon and I remain hopeful that she'll have a long and happy life.  She's been in the hospital far too long. Her doctors feel there's nothing more they can do for her at this time.  We're making arrangements to bring her home tomorrow.  She isn't well enough to have the (preventative) intestinal surgeries and her intestinal issues aren't serious enough to make that decision difficult. So, she's coming home with a bit of reflux.

We look forward to being all together again.  We've waited a long time...not always patiently.  We hope that she will flourish with all the love and attention she'll find at home.  We still need her pulmunary veins to grow and grow and grow.  

Thank you all for your kind words and support.  Please continue to pray for us.  I look forward to filling my blog with more happy stories and fewer medical updates.

:)

Seraph's MRI scheduled for Friday (Jan 16th) ~3pm

Please keep my lil Seraph in your prayers.  We'll know more after the MRI.

More hard news....

The cardiologists are still compiling the results from Seraph's tests.  One thing they know for sure is that the blood vessels in question (pulmonary veins from her right lung) are uniform in diameter.  This means they can't use surgery to widen them.  This means that IF they are too narrow, there's nothing more they can do for her.  IF they are too narrow, she can't have the 3rd heart surgery that she needs because it won't work for her.  IF they are too narrow, they won't grow big enough for her heart to work right.  IF.....

I've been taught not to worry about "what if's" and "if only's"....but it's such a big deal. The first day they told us she had a heart problem, I told my dad we were gonna need a miracle.  She's been strong.  Her cardiologists have been good.  We've felt prompted to do certain things at certain times.

Her doctors are pretty sure her blood vessels are too narrow.....but they're not 100% sure yet. They're doing more tests.  So, I'm thinking it's a good time for that miracle. ;)  Please pray for my lil Seraph.  I just want her to be OK...to come home and be part of our family.....to have a chance to get to know her...and to watch her grow up with her twin sister.

I'll let you know when we find out more.  Thank you.

Please Pray for Seraph...

Seraph is having another test this week - an MRI on her heart.

The cardiologists are worried about the blood vessel that returns the blood from the lungs to the heart.  They think it might be too small.  Think of a garden hose.  You know how the water spurts out faster when you cover the end part way with your finger?  It's like that.

They aren't positive that it's too small, but they're very concerned about it.  After the MRI they'll know more.  They'll know if she can be sent home and wait for it to grow.  OR They'll know if she needs to have another open heart surgery to widen the vessel BEFORE she can come home.(!!!!)

We want what's best for her....but we're so tired of having her gone.  We're really hoping that it'll be something she can grow out of on her own.  It's really critical because that same blood vessel will have to carry even more blood after her next heart surgery (the  Fontan).  And we don't want too much pressure in her heart.

Please pray for her and for her cardiologists.  The MRI will be scheduled for sometime this week.

thanks.

oh, they're pretty sure she does NOT have an infection.  Her symptoms were from trying to wean her off some of her anti-anxiety drugs too quickly.  They've slowed down the weaning process and she seems to be doing better.  She should be weaned off those drugs in 3-4 weeks. (Unless she has another surgery.)

Yipee Horaay Woot Wahoo Yaaaaaay :)

Seraph just came out of the cath lab.  They found some problems that they were able to fix and she should do better and come home.

After the Glen, the heart has more pressure than it's used to having.  To compensate (and especially if the body's fighting off any kind of infection, which she was) your body makes new veins that reconnect areas of the heart to relieve that pressure.  Those new veins basically undo the Glen.  So, they sealed up all these new veins that aren't supposed to be there. Now her Glen should be working as intended--the returning blood from her head will go straight to her lungs.   Her heart will be more efficient.  She'll be pumping a higher percentage of oxygenated blood to her body. She'll feel better.

She still has some extra veins that were too small for them to close.  These will go away on their own as she heals (when the original stressor/infection is gone...which it is.)

Not 5 minutes before we heard the news, I told Sexy Haqon that it'd be great if they'd just call and say that they found the problem and just fixed it while they were there.  And that's exactly what happened.  Way cool!

They plan to extubate her tonight or tomorrow.  She had zero complications with the procedure.  Everyone is happy.  ...and I'm the happiest of all :)

Thanks, everyone :)!!!!!!!!!!!!!!!!!1

Seraph visit - happy :)

Seraph looks much better without the lung-tube.  Her voice is soft, but sweet.  Her vocal chords are out of practise, but not damaged.

Her eyes are pretty glossy.  She has lots of healing to do.  She's breathing better enough to keep the tube out, but they're watching her closely.  She's on the high-flow oxygen.  They'll ween her off it slowly and then she'll be home.

We missed having her home at Thanksgiving.  She will be home for Christmas.  She wiggled and squirmed the whole time we were there.  and the very best part--we got to hold her!!  Haqon sang her songs and she settled right down.

Seraph Extubated :)

They took out the tube that went down her throat and into her lungs.  She's breathing too rapidly, but they're going to give it 24 hours to see if her breathing rate settles down.  The more worn out she gets...the faster her breathing rate gets.  They might have to put the tube back in.  

but hopefully...hopefully she's done with it.  She hates that tube.  Now that it's out, her voice box is working again and she can suck on her binky :)  She's on high flow oxygen.  She still has a lot of recovery to do before she can come home, but taking the tube out is a huge step in the right direction.

Mommy is happy :)

Minor Surgery

The right side of Seraph's Diaphram seems to be taking a vacation.  Today they'll make a small incision and use a few stitches to keep it down out of the way.  Then her right lung will be able to fully expand.

She's 3rd in line for surgery...so I'm not sure when exactly they'll take her in.  It's very minor compared to what she's already been through.  It should only take an hour or two.

Seraph

Slowly.

She's getting better...ever so slowly.

They're taking her in for some tests today to see if there's anything physical that's slowing down her healing process.  I should know more tomorrow.

Yesterday I woke up with a toothache--shooting pain as I tried to eat oatmeal!  Happily, my dentist squeezed me in and I was feeling better by noonish.  :)

We took Beautiful Rabbit and her friend to see "Into the Woods" last night.  They did a great job.....and the girls got to meet Cinderella.

Seraph's doing great :)

Her surgery went well.  She's sleeping comfortably today.  

During the surgery, the nurse comes out every 30-60 minutes to tell you how things are going.  Haqon decided that next time we need to tell the nurse to just walk in the room with a thumbs up if things are going OK.  A whole eternity can pass in the time it takes the nurse to walk across the room, squat down, politely ask how you are doing, and then go into details on how your baby's surgery is going.

She looks great.  I didn't take pictures this time.  She's in a crib instead of a glass box this time.  She has all the tubes and wires as last time, but she's 3 times as big....so they don't overwhelm her nearly as much as last time.