I can't stand being away from--esp when she's hurting.  It's a mom thing.  Hard wired into my brain.


They just put in a picc-line.  Her primary doctor and I have come to an agreement concerning the way her care will proceed.  They took the IVs out.  Yesterday she had both hands taped up and couldn't hold anything.  Also, they were drawing blood every 4 hours (pokes!).

They're worried about her kidneys.  Her diarrhea has calmed down and she has started peeing again.  Her stats are returning to normal.  These are good things.  She's headed in the right direction.  I think she'll be away for a week.

Serah in the PICU

Monday Angel caught a stomach bug.  She shared it with the rest of the family.  We tried to keep Seraph isolated but she'd already caught it.  Then we tried to keep her hydrated with extra Pedialyte.  But she had more output than we could safely rehydrate at home.

We did keep her hydrated enough that we were able to drive to the hospital ourselves instead of taking an ambulance.

She's unhappy.  She's already lost her first IV.  The second IV isn't working very well.  So, they've already put in a third IV.  Both hands are all taped up.

She's going to be OK...but her mommy is sad.  I don't want to leave her here.  ...and she doesn't want me to go.  :(

Please keep her in your prayers.  Pray that she'll rehydrate soon and that she won't catch anything while she's here.  Thank you.

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.

Seraph's trip to the ER

So...

Yesterday we switched Seraph to toddler formula (with real milk) for 2 feedings. Her nutritionist wanted to see if her tummy could handle milk. The answer is NO WAY!!

She had really bad diarrhea for hours afterwards. She spiked a fever (101) that went down with Tylenol. Around midnight she calmed down and slept.

Somehow her g-tube broke during all of this.....so, while we were sleeping, her g-tube was leaking. So, she basically missed all her night feeds, too.

We took her to the ER for dehydration. She was sooo purple. Dehydration really affects her heart and the way it pumps so everyone in the ER was really freaked out and ordering tests like crazy to see how bad it was. Some of her tests suggest that she might be sick and that her heart might be doing funky things. (that test came back already--her heart is NOT doing funky things...it was something else that they've fixed.)...

So, she's in the PICU tonight. Rehydrating. Having tons of blood drawn. They'll know for sure in a couple days if she's OK to come home. She should be rehydrated enough by tomorrow night that they can address her g-tube issues and switch her back to normal (non-milk) feeds.

They did NOT have to intubate her....When we got to the ER they had to put her on 10 L of oxygen...but by the time we left the ER her stats were normal on room air.

I miss her like crazy and wanted to bring her home with me. I love/hate the hospital right now. Mostly I'm worried that she'll pick up some bug/flu while at the hospital.

Good News, Seraph :)

Seraph hangs out on a huge floor mat in the PICU. She's surrounded by toys. She LOVES this toy a ton!! (We might have to get her one..heh) She's rolling onto her sides, reaching for things, sitting up in chairs, smiling tons....

Good News:

--Seraph is on 1/2 liter oxygen (that's less than what she'd been on at home.)

--She took a super long nap today (great because she hasn't been sleeping for more than a few hours at a time)

They're keeping her in the PICU for now. They need to make sure she can tolerate being off the high flow oxygen.

She LOVED playing with her papa. He's just so fun!! Strong Bear came with us today. He wanted to see Seraph. He played with her toys and talked to her a lot. (Later, he threw pennies in the fountain and played on the rocks while daddy brought the car around.)

Look at all those teeth!! Seraph has 2 molar teeth coming in on bottom. She loves her teeth soooo much. She's always touching them or biting toys.

We finally wore Seraph out and she fell asleep in my arms. She never lets me cradle her like this. I hold her on my shoulder alot or in my lap (facing away from me). It was wonderful to snuggle and watch her slow blinks as she drifted off.

Thank you for all your prayers. Seraph really seemed like herself today....and it was wonderful! Can't wait to have her home :)

Seraph - a little better today

They're weaning her high flow oxygen down to 4 liters today. She's off all the sedative and muscle relaxant drips. Yesterday when we visited, she was agitated when she first woke up, but then fell asleep in Beautiful Rabbit's arms. After a very long nap, she woke up ready to play :)

Her wonderful nurse today plans to break out the floor mats and play with her down on the floor today. (Daddy always stresses the importance of letting Seraph experience multiple positions in a day. So, he's pretty happy with this plan.)

She is off Lovenox! Yay! No more shots!! and Mom and Dad won't have to give her shots at home - double yay!!

Off bi pap!

Seraph is off bi pap and on the high flow oxygen. She's on 8 liters high flow now. Once she's weaned down to 2 liters they'll mover her out of the ICU. Then once she's weaned down to 1 liter oxygen she can come home :)

Good job, girlie. No pictures yet - maybe once daddy gets home.

Off the Vent!

Seraph is on bi pap tonight. I know it looks silly, but it's sooooo much better than having a tube down her throat. They extubated her successfully. She was on high-flow oxygen for about an hour. Her blood gases came back a little lower than we wanted so they put her on bi pap to assist her breathing. It's more helpful than highflow and less invasive than the vent..

I thought she'd just tug/push it off. Nope. It took time, but she figured out how to sneak a few fingers into her mouth. She actually likes feeling the bottom of the mask with her tongue and sucking on it.

Her sweet cousin came to visit in the PICU. Seraph LOVES her cousin. She smiled and stuck her tongue out and kicked her happy feet. Her smile was rain on the desert. I didn't expect her to be happy so quickly after extubation.

Hopefully she'll do well over night. Then they can restart her feeds and start weaning her oxygen needs down so she can come home :)

Homecoming is still a ways off, but today was a HUGE step in the right direction. We love you, Seraph. Thanks to everyone for your prayers and support.

/happy mommy

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.

In your Prayers...

Thank you for keeping Seraph in your prayers.  We are praying for something very specific today--that Seraph is able to come off the vent today or tomorrow.

So here's the problem.  She loves to move around.  All that physical therapy strengthened the muscles for rolling and grabbing and pulling out IV's and tubes.  They have to keep her sedated and on a heavy muscle relaxant to keep her from pulling out lines and tubes.  That same muscle relaxant is working too well on the muscles she uses to breath.

When they try to wean her off the vent (that's breathing for her right now), they turn down the muscle relaxant and she starts thrashing around and pulling on anything she can get her hands on (which is pretty much everything).  She does this BEFORE (or maybe instead of) trying to breath on her own.

This morning they switched her to a new muscle relaxant that should keep her drowsy without inhibiting her ability to breath on her own.  They have to wait for the other drug to clear out of her system.  So, later today they'll turn down the drugs and the vent for a spontaneous breathing trial.  (The vent lets her try to breath on her own, but breaths for her if she doesn't breath well enough on her own.)  If she does well, she'll come off the vent.

If she doesn't do well, the doctors are getting very close to the point where they'll consider her progress stalled.....the point where they'll stop feeling like she CAN progress.  They're already a little baffled by how well she's done since January.  They want her to do well, but it makes more sense to them for her to do poorly.

Mom and Dad have not given up hope.  Seraph has had so many prayers and positive blessings.  Deep down, I really feel like she's going to be OK.  But, it's also important that her doctors don't give up hope either.  So, that's why we're praying that she'll come off the vent today or tomorrow.

Plus, having the vent off today would be a pretty great birthday present for her :)

Please pray for my little girl - I'll update you when I find out more.

Thanks.

...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 ;)

Seraph Hanging out in the PICU

When I get sick, my body manages to fight off the sickness *and* continue to function. When Seraph gets really sick, she throws EVERYTHING into fighting off the sickness....and her body doesn't function well. She is NOT breathing on her own...or regulating her own temperature or keeping her blood pressure up. All of the things we do without thinking, her body is ignoring them to fight off whatever is attacking her.

So, the doctors are optimizing her body functions so she can fight off whatever is attacking her. Then she'll slowly take over the normal body stuff again. I know this doesn't seem like news, but it's all I have to offer right now.

She's sedated and bloated - they're trying to re-balance her intakes and outputs.

All very boring doctor stuff. She's been in the hospital for 3 weeks. I'm guessing she'll stay in the hospital for 2-3 more weeks.

The twins' first birthday is Sunday :) We'll have to do something fun for it.....

Back in the PICU

Seraph is back in the PICU. She ran a high fever (104 F). They had to re-intubate her. They think she's caught a stomach bug - maybe the flu. Her blood pressure dropped too low.

She does that when she's really sick.

She's stable now. Her temp is normal (on tylenol AND motrin AND a cooling blanket). Her blood pressure is normal (on meds). Her breathing rate is normal (on the vent). She is sedated. She has 3 new IV lines. They're giving her medicine in case it's the flu....and in case it's bacterial....and etc.

They'll keep her on those meds until one of the tests comes back positive OR until she fights off whatever bug is attacking her.

Her x-rays looked good. It's not in her lungs. Her echo looks good - it's not a heart problem. Her heart rate was really high...but it's closer to normal now.

She's off feeds and back on saline.

Basically, she's really, really sick....but she's going to be OK. ...in a few days.

"I'm Extra Good Looking Today"

Tuesday when we went to see baby Seraph, Sexy Haqon picked up the security phone and said, "I'm extra good looking today." The PICU doors immediately popped open to reveal an amused nurse. When she finally stopped laughing enough to talk, she explained that she'd heard lots of jokes and people pretending to be the pizza guy, but this was the first time for that one :)

Haqon's always cheering people up like that. It's nice to have him around. ...plus, I've never seen the PICU doors open so fast!! XOXOX

Holding Seraph :)

They extubated Seraph today :) I think her throat still hurts. She was blowing bubbles instead of swallowing. But, I think she's happier. She gets to have her binky again. and like Delightful Finch, Seraph really likes her binky :)

They took more tubes out of her chest. I think the only thing they left in her chest was the blue tubing for the pace maker. They still haven't had to use it, but it's there "just in case". It'll come out soon, too.

I don't know how long she'll be in the PICU healing. She's doing so well, it's easy to just get crazy excited for her to come home. It was wonderful to hold her. She's heavier than Angel....but I'm not sure how much heavier. Or how much of that weight is excess fluids that will be draining off.

Seraph Update

Seraph is doing well. They took out a few more tubes. They're letting her practice breathing on her own sometimes. They've decided to keep her in the PICU. Her nurse said she's feisty, which is a good thing. She peeked at me twice while we were there. (Not my fault Haqon was looking the wrong way and missed it!)

Haqon and I completed the CPR training. They even brought in TWO infant dolls for us to practice on (twins!). I was much better at the CPR than Haqon was. He kept breaking out into song!

Seraph Update

They closed Seraph's chest. She tolerated it well. They expect she'll graduate from the PICU early next week. They kept some of the draining lines in. Once those are out, we'll be able to hold her again. She's eating 2ml of breast milk every hour. They're still IV feeding her, too. She's tolerating the milk well. (She has a feeding tube down her nose and into her small intestine.) She was pretty bloated from the blood transfusions. So, she's got a double chin that'll go away once the excess fluids drain off.

This weekend Sexy Haqon and I will go through some CPR training at the hospital in preparation for bringing Seraph home. I'm a little scared of having both to care for at once...but I'm also very excited. Angel's fit in so well with our family. I expect the same for Seraph once she's home.

Hospital - Day 10 (PICU visit)

My morning nurse took pity on me after my first NST. She must've noticed my sleepwalking as I returned to my room. She guarded the door and didn't let anyone in for 4 blessed hours. The phone rang after the first hour. wrong number. again. (Someone keeps paging doctors and leaving my number instead of their own). I unplugged the phone and woke up happy and rested several hours later :)

Visit to the PICU:

I thought I was prepared to see it. It was clean...and friendly..lots of machines, but they all looked nice instead of scary. None of the babies were ever alone. The thing that threw me off was the babies. I expected the babies to be sickly or listless or sad ....they weren't at all. This one girl I saw was so very beautiful. She was awake and alert...and interactive. Her mouth was all covered up to keep her breathing tube in....but she had the most expressive eyes I've ever seen in a baby. What a strange way to start her life. So many tubes. No tears. Just looking around, taking in her world.

I waited 'til I was back in my room to cry. I called Sexy Haqon and he made it all better because that's what we do for each other. Thanks, sweetie. I hadn't thought much about after my inpatient stay. I'm not ready for it.