Mommy Finch....

Baby Angel got her first tooth today!  Poor grumpy girl.  The only thing that calmed her down was watching Baby Seraph.  So, eventually, I dragged the swings over next to each other.  Delightful Finch was in heaven playing with both of them.

Seraph watches Angel closely. Today Seraph watched me pick Angel up and hold her when Angel cried.  I'd kiss Angel's fingers then we'd both giggle.  Then I'd kiss baby Seraph's fingers and then giggle.  Seraph smiled.  Then I'd rub Angel's arm and then rub Seraph's arm.  (Seraph doesn't like being held....and she's not sure if she likes being touched.)

Seraph was OK up until the point where Angel started grabbing Seraph's arm and leg. (who can resist grabbing a wiggly baby's leg?).  Then Seraph started looking distressed.  Being a mommy-mom, I immediately boosted Angel up so she could play with the animals on the mobile.  Then Seraph didn't have to worry about being touched, but still got to watch baby Angel.  Seraph LOVED watching Angel play with toys.

My favorite part of the night was just before bedtime.  The twins sat by me - Seraph in Angel's chair and Angel sitting unaided on the floor (her newest trick).  We put on a CD (thanks to Beautiful Rabbit's cousin) and then the kids + Haqon danced wildly around the room.  Then they played the jump off daddy's back game.  Seraph took it all in. It felt happy.

Shared Woes...

Last night Seraph had pretty bad reflux around 11pm.  The only thing that helped her feel better was her daddy marching in place carrying her in her car seat.  Don't ask how we came up with that one - Daddy's are magic that way.

A few hours earlier, Seraph was complaining mildly and baby Angel was complaining, too.  It was stressful hearing it in stereo.  It seemed a little weird, but my sleep-deprived brain never figured out why.  Haqon pointed out that Angel wasn't grumpy, she was just copying Seraph.  It was like having an echo in the room. It was much cuter once I knew what she was doing :)

Peaceful

Thanks for all the warm wishes - it's been great to be all together again.

Getting Reaquainted

Angel was telling Seraph a bedtime story!

I'm sooooo tired...and also happy :)

Seraph is home!

Hurray!

Delightful Finch is fascinated with Seraph and wants to spend every minute with her.  We feel complete having her home.

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.

:)

Hi

Seraph's Homecoming Postponed

Since Friday night, Seraph's respiratory rate has been too high.  They think she might be aspirating some of the stomach acid from her reflux.   Until her respiration rate comes down, they won't even consider sending her home.  She has been on the 3rd floor instead of the ICU since last Wednesday.  They aren't sending her back to the ICU at this time. We'll know more tomorrow.

We're disappointed--esp Beautiful Rabbit who was excited to have Seraph home for her 9th birthday (Tuesday).

While we want her home as soon as possible, we also want her to be able to stay home when she comes home.  In that respect, maybe it'll be better to get her intestinal surgery done now instead of next month.  I've been worried about how hard it would be to hand her over to the surgeons after having her home for a few weeks.  ...and we have been praying that she'll be able to come home and stay home.  Maybe this will be better.

When her reflux and medicine-withdrawal aren't bugging her, Seraph is a very happy little girl. I wish I had better news for you.

Ways to Cheer Me Up...

I just took this survey - you should go take it, too:

Win a Hullabaloo $25 gift card ! I finished it in 3 minutes, they have a great privacy policy, and it'd be really cool if one of my friends (or a friend of my friends) won one of the gift cards.  So feel free to post the link on your blog, too, if you want.  They make really cute stuff. :)

I've been playing url riddles with Beautiful Rabbit.

And, of course, there's always chocolate brownies!!! and hugs....and talking to my mom.  Moms are great ;)

Angel's sharp gums...

Lil Angel is teething!  All month she's been drooling like crazy.  Finally she has something sharp going on - 2 on the bottom.  No teeth showing yet.  Hopefully she's close. She deserves a break.

Sometimes Daddy's left shoulder is the only comfy place in the whole world!

"Best Seraph Visit Ever....,"

said Haqon.  I think I can see why:

Ice Skating

Beautiful Rabbit took some of her friends and cousins ice skating.  Though it was Rabbit's first time, she skated really well. ("Mom, I fell down 6 times!!!") She fell down a few times, but never all the way and always got back up.  Her friends were full of energy ....and some of them think they're already teens - ack! It was fun to have cousins there, too--they were big helpers....esp to me.  I didn't skate that well...Ok, I screamed a lot...but I didn't fall!  (esp after I traded in my skates for my tennis shoes!)

Rabbit's birthday isn't until the 27th, but we wanted to celebrate early - before Seraph comes home.  Instead of presents, she asked her friends to donate gently-used toys for the children's hospital.  Baby Seraph has really loved some of the toys other people donated.  Then we forgot to take the toys in when we visited Seraph!  Doh!  Luckily we go there a lot :)

Happy Pre-Birthday, sweet girl :) xoxoxoxoxox

Hooray!

Seraph's MRI results came back and her vessels are not as small as they thought.  She is still a candidate for the next surgery that she needs and she may be home as early as the middle of this coming week!  Lots of dancing and shouting at our house now.  Thank you so much for the prayers and support.

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.)

Seraph's Family

We made a video for Seraph.  It had all the kids in it.  She LOVED watching it.  Her eyes were glued to the screen.  She watched it 7 times. She liked hearing the kids giggling.  She smiled and smiled and smiled.  I think she knows her brother and sisters :)

She was pretty happy today.  I took one of the socks off her hand so she could suck on her fingers a bit. She seemed to like it, but her gag reflex is really strong, and she choked a few times.

Sexy Haqon fell asleep waiting for her to wake up.  She was sleeping in her swing when we first arrived.

Awwwwwww.....

It looks like Seraph has an infection.  They've started her on antibiotics.  They're not sure what exactly it is yet.  They tested her blood, urine, spinal fluids.  So far everything's come back clean.  So they'll get more results back in 24 hrs and even more results back in 3 days.

She was being really fussy - more fussy than her normal amount of fussy.  She had a fever and her white blood cell count was up.

Poor lil girl....

She is still doing well on her oxygen/breathing rate/blood pressure/pulse.  

Seraph is on 1/2 Liter Oxygen (that's low enough to come home on).

She's happy and doing well.  They're weening her off her blood pressure medicine.  Once they've done that, she can leave the ICU.  I expect she'll be home within the week.

I'll take some more pictures tomorrow.

Thank you for all your prayers.  It'll be hard to have 2 babies again, but I'm soooo looking forward to it :)

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

Sweet Seraph

Seraph had a really good day.  She seems really happy.  She loves her swing.  She likes watching cartoons. (Angel likes cartoons, too!) She's on a medicine that helps her with heart function that seems to be helping a ton.  It's not something she can come home on, but it's wonderful because it shows us that her heart is able to function better.  She just needs more time to heal up...or something.

The doctors decided they need to take a closer look at her heart.  So, tomorrow around 4pm she's having a procedure in the Cath Lab.  They'll insert some probes thru a vein to check pressures inside her heart.  They also use contrast to look at specific areas of her heart.

So basically, they'll know more after tomorrow's procedure. Please keep praying for her.  We're hoping she'll be able to come home and stay home with us this time.

Seraph Update

Beautiful Rabbit and I visited baby Seraph today.  I coerced the nurses into trying Seraph in a baby swing.  Seraph liked it...but she coughed so much she spit up.  So, we're not sure if it was a good thing or not.  It's good that she seemed to enjoy it.  It's good that she got some of the phlegm out.  They have to watch her very closely in the swing to make sure she doesn't choke.  I think they plan on trying it again.

All of Seraph's surgeons and cardiologists are getting together this Wednesday to go over her case.  She's recovering way too slowly by all accounts.  They're going to have a brainstorming session with everyone to see what they can come up with to help her improve.

Please pray for her doctors that they'll be lead to the best plan for her.

Thanks :)

Seraph was happy for a bit in her swing.  She smiled and stuck out her tongue again and again like new babies do.

Day 1

Sexy Haqon offered to wrestle all the kids single-handedly so I could go visit Seraph today.  He said I could stay as long as I wanted.  What a brave sweetie :)

The nurses hung one of Seraph's bears over her so she'd have something fun to look at when she's awake.  I guess she gets bored sometimes.  She loves classical music.  Today she was listening to a few songs that I actually know how to play on the piano :)

She's teetering right on the edge of cpap/high flow.  Right now she's on high flow.   I didn't get any pictures with her eyes open today cuz I was too busy being with her!  She's been blowing bubbles, holding mama's finger, and looking around the room.