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.

Thanksgiving in the ICU

Yep - Seraph is back in the hospital.

She has been gaining a lot of weight all month.  We thought it was normal weight gain, but turns out she was retaining too much water.  Her diuretic medicines (the ones that help her pee off extra fluids) may have been an incorrect dose all month.  OR she might have a very serious problem with her heart.  She'd been slowly getting more puffy.  Wednesday morning her neck was extremely puffy and she was having trouble breathing.

An ambulance ride and a relatively calm ER visit later, they transfered her to the PICU. As they rolled the bed towards the elevator, she stretched her neck all the way back so she could see her mommy and daddy.  The nurse pushing the bed was walking faster than us, so it must've looked like (to Seraph) she was being separated from Mom and Dad. Fear and stress filled her face.  We ran up next to her bed and she was visibly calmed.

I'm glad she's old enough and strong enough to communicate her feelings.  It also makes it harder to leave her at the hospital while we go home. I've been crying alot this time around - I'm just sad.  We expect she'll be home in a few weeks.  We expect she'll be home for Christmas.

She is still in the ICU.  She is on 7 liters of high-flow oxygen.  (That's a lot--I believe after 8 liters oxygen, they have to switch to bipap or a ventilator.) She is slightly sedated - otherwise she pulls off the oxygen tubes that she really needs.  She's awake and responsive. Her breathing is slightly better than yesterday.

I think once her breathing is better, they might want to do another heart cath. They need to make sure there's not an obstruction in part of her heart.  They haven't seen one with the non-invasive tests they can do.  ...but they need to be sure. An obstruction would be a serious problem.

Despite all this, Thanksgiving was very nice.  My family came over and we ate and played games all day and all night.  I wouldn't have made it through the day without my family here to distract me.  Thanks, guys - I love you :)

Please pray for my sweet Seraph.  Thanks.

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.)

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.

Seraph's Surgery: The Glen Procedure

Tuesday, Nov 11th, Seraph is scheduled for the 2nd stage of the Norwood Procedure (aka the glen procedure.)

She is 4 1/2 months old.

They'll remove the artificial shunt that was inserted last time.

They'll rearrange the blood vessels that bring blood back to the lungs.  (The vein coming down from the head (superior vena cava) will be detached from the heart and attached to the artery that goes to the lungs to get oxygen.)

So, after this surgery, all the blood returning from her head will go straight to her lungs instead of going back to her heart and then being pumped into her lungs.

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In her next surgery (2-5 years old) they'll rearrange things so that the blood coming from her lower body flows straight to her lungs, too.

My other post on Seraph's heart defect and the surgeries she'll have is found here.

For more information on the Glen Procedure, click here.

We expect things will go well.  Thank you all for your prayers and support.  It's hard watching someone so tiny go through so much.  I really think she's going to be OK.  We expect she'll be in the hospital for a week or so. ...and then back home feeling better than ever :)

Hospital - Day 15

Beautiful Rabbit and I used to have tea parties together....with herbal tea and tiny sandwiches and fancy cookies. I miss those tea parties. Happily, we were able to spend lots of time together this weekend. She quickly learned that it's way too easy to trick Mommy right now. She decided this is because I've given half of my brain to the twins so they'll be really smart. I miss her. She's sweet and smart and loving - she makes me happy just by being by me.

I'm happy that it's June. June 26th is the birthday we're going for with the twins. That puts them right at 34 weeks. After that the risks are too high to keep them in. Please keep praying for us :)

I'm grateful for the fan my HCA brought me today. It was sooooooo hot today I couldn't keep my eyes open. Yes, they have a/c...it was just struggling today. Also, I'm used to 68 degrees at night...and they like to have it around 72 degrees at night.

Dr Peri Visit Today

The twins are very active. Baby B is still using Baby A's head as a foot rest. My perinatologist is going to start seeing me every 2 weeks now. One chamber of Baby B's heart is too much smaller than the other chambers. We're pretty sure she'll need surgery once she's born. I'll go see a fetal cardiologist next month so they can plan everything out. They might try to leave the babies in a few weeks longer so Baby B will be more ready for her surgery. We'll know more next month. Did you know that 25 weeks is the best time to see the heart in an ultrasound? Now you do ;)

More Woes

My Beautiful Rabbit is sick. again. I'm pretty sure it can't be food poisoning this time. She said lots of kids at school are coughing. I hope it's not the flu. Poor lil thing. She keeps smiling at me. I hope that means she's starting to feel better.

Baby B might have a heart problem. It's too early to tell for sure. They'll check again in a month. One of the chambers in her heart is too big and the one next to it is barely there at all. Safire reminded me that her doctors were worried about her baby A's heart, but when they checked again everything was fine. Hopefully it'll be like that for us, too.

Please remember us in your prayers. Thanks.