This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Friday, October 30, 2009

Thriving!

As I mentioned in my last post, I knew Scarlett was really really close to coming off the feeding tube and the oxygen nasal cannula.  This morning Beth (Scarlett's cardiologist) called to check on Scarlett. I told her that last night I had downed Scarlett's oxygen to 1/32 liter for the next 24 hours. I also said that I had started to bottle feed her and she hadn't thrown up yet. She even took a Motrin/Lasix bottle barf-free. So Beth said to go ahead and turn off the oxygen and pull out the tube and see how she does. and I said "you mean right now", and she said "pull it all out!".

Sooooo.... I'm happy to introduce for the first time since she's been home, my tube free happy baby:




After about 10-15 minutes I checked her on the pulse oximeter machine and and she was still above 95!! yahoo!


I went to take another picture of her on the bed and she was on all fours trying to crawl away!





Well, she's still not crawling yet, so I wasn't really worried about her actually crawling away, but she was still on all fours (first time ever) and rocking back and forth like she wanted to crawl. I am sooooo happy.

My baby is happy too. She's at least 50% better than she was yesterday (high maintenance wise). Probably because she's so happy being tube free.  I'm going to continue to spot check her throughout the day to make sure her oxygen levels are above 95, but for now, we're just celebrating that she's happy, she's home and she's tube free. : )

Don't get me wrong, she still can't bear to be separated from us even for a second... but she's so much happier today than she was for the last 3 days. : ) and I'm super happy she can go anywhere in my house instead of in the 6 foot radius in my living room. Yippee!   It's a beautiful day!

High Maintenance


According to the dictionary and Wikipedia, high-maintenance is defined/described as 'one who requires a lot of attention'. Boy is that an understatement! I can only surmise that it is related to separation anxiety, but these last 3 days have been the most trying of my motherhood. Scarlett is only happy if she is in my arms or I'm in her immediate vision. If I step away even for a second, she screams bloody murder (probably learned that from her 'terrible twos' sister Violet).

It's funny actually... tonight Todd was holding her and singing to her to calm her down, and she relaxed and was actually falling asleep. The very moment he stopped singing to her..within seconds, she was crying again arching her back and kicking and screaming. Then he'd start his little tune again...and she was instantly soothed again. Then when he'd think she was asleep, he'd stop singing, and on cue she'd start crying, screaming, and having a temper tantrum/fit as only an 8-month-old can. It was amazing to witness...(I wouldn't have believed it if I hadn't seen it with my own 2 eyes!)

I literally cannot put her down or she has a royal cow.  I don't mind holding her all day (walking, sitting, standing with her), but it is very hard to make her medicine/food syringes, check for ng tube placement, open bottles of Pedialyte, and do other things one-handed. [because she's in my other arm]. Here is a pic of the tools I use when I'm tube feeding her that need to be washed (one-handedly) after each tube feed...which is every 3 hours:



It wouldn't be that big a deal either if she wasn't tethered to the oxygen tank and I didn't only have about 6 feet of clearance. But that would be nothing if she wasn't a holy screaming terror for 18 hours a day. It is taxing on your nerves. I love her more than words can say, but sometimes even when I'm holding her...and she's changed, she's fed, she's warm, SHE'S STILL CRYING!...so I think to myself "Calgon Take Me Away!!". What happened to my adorable, calm, happy baby??  She was never like this before surgery. :(

Violet, on the other hand (her tyrannt two-yr-old sister), was a screaming terror from the second she was born and has never stopped. I'm already used to Violet being high maintenance, but my sweet little precious little, soft spoken little Scarlett..the one I refer to as my little Zen baby?... No, this is a first, we're talkin' major unchartered territory.

On a side-note...she barfed again at 3 am yesterday (24 hrs ago) when I had gotten her back to 100% breastmilk. So we backtracked a little and put her back on the 50/50 concoction. and she seems to be doing okay. Also tonight I offered her a bottle by mouth and she sucked it down like nothing (she drank it all up and very fast too). An hour or two later, we gave her another bottle and she drank that too. So far so good. No barfing yet. (knock on wood).

I even gave her Motrin and Lasix in a bottle and she drank it just fine. If she keeps up with this and continues to be barf-free, I have no problem pulling the feeding tube fairly soon! :) yay!

Also, I had lowered her oxygen to 1/16 from 1/8 yesterday. Then today when I was walking around the house with her, I had to unplug her from the tank..(like to go to the kitchen to make a bottle). She was unplugged and on 'room air' for at least 10 minutes. I spot-checked her on the pulse-oximeter and she was right around 95-96 which is great (they want her over 95). So,...in addition to probably being able to wean her off the the feeding tube, we're very close to weaning her off the oxygen too! yay! yay! yay! I turned down the oxygen a few hours ago to 1/32. Maybe by tomorrow night she'll be fully weaned?! You can see the tank in this pic:




I know there are other reasons why Scarlett has been so needy lately other than separation anxiety. She is also teething, and she could have tummy (gastro-intestinal) problems related to acid reflux.  I'm still on a lactose-free diet to help with her tummy problems and let me tell you... it S U C K S!!!  I have a huge bowl of Halloween candy (Snickers, Kit Kat, Butterfinger etc..) that I can't eat. It's torture!

In the morning, I can't have a bowl of cereal, I can't have yogart, I can't butter my toast...for lunch, I can't make a grilled cheese, chese crisp, NO PIZZA!! Man, I guess I don't realize how much dairy I eat until it's taken away from me! But I think the most important lactose-free sacrifice I'm making is NO CHEEZ-ITS!! It's no secret that I'm totally addicted to Cheez-Its. I joke with my sister that I keep a box at work, box at home, and a box in my car!!! ; ) I love Cheez-Its! I miss them already and it's only been 3 days! But I will do anything for my Scarlett and if it means giving up Cheez-Its, then so be it. :)

Sorry this post is so long. It's kind of like 3-blogs-in-one, I really haven't had time to write since she's been so high-maintenance lately. But she's asleep right now and I'm up pumping and blogging. :)

Wednesday, October 28, 2009

Separation Anxiety


I had to call Beth (Scarlett's cardiologist) tonight to ask if it was okay to feed her 1 ounce every hour versus 3 ounces every 3 hours. Just to get something in Scarlett's gut in the short term, instead of making her wait 3 hours to get something in her tummy. She said it was not preferred, but okay for now. Eventually we want Scarlett's tummy to expand/contract for a 'full' feeding (3-4 ounces) rather than just 1 ounce per feeding. Makes sense, but I still wanted to start small for now.

So from 6-9pm, I gave her one ounce (50% Pedialyte / 50% lactose-free breastmilk) on the hour. She tolerated her feeds rather well. She spit up only once, but it was exactly that...spit up. Not barf. Thank God. Then around midnight I tube-fed her 3 ounces (of my 50/50 concoction) and so far she's keeping it down. yay!

While I was talking to Beth, she mentioned to me that it's quite possible that Scarlett is suffering from separation anxiety. She said it's common in this age group. Evidentally between the ages of 8 months and 1 year, is when separation anxiety is first likely to appear. Beth (unbeknownst to her) practically had me in tears talking about how Scarlett was nice and comfortable with her mommy and daddy pre-surgery... in her own house, her own crib, nice and happy and secure....then October 12, we completely turned her perfect world upside down and broke her trust.

Everything that was sacred to her... her home, her caregivers, her life...was taken away from her, then to add insult to injury she had horrible things done to her...poking, proding, needle pricks..bandage tape removal, tubes shoved down her throat, a different nurse (caregiver) every day/night. Now that she's home again, she's getting used to having mommy and daddy back, but the second we put her down she screams and cries until we pick her back up again. It's almost like we can't put her down. Even if she's sleeping we can't put her down because she'll wake up the second she leaves our arms. Poor, poor little baby. :(  In her 8-month-old brain, she thinks that if we leave her, we're never coming back. :(

Separation anxiety never even occured to me. It may or may not explain the barfing, but it totally explains her behavior in the past 3 days. Uncontrollable crying for no apparent reason..screaming when we put her down...calming when we pick her up, etc.


Tonight was a much, much, much better night than last night or the night before. Maybe it's a combination of slowly introducing milk back into her diet, or the extra TLC (tender loving care) we're giving her (like not putting her down even when she's calm)...but something has helped and she is sound asleep tonight (on the living room floor sleeping right next to daddy) and doing much better. We've also been able to turn down her oxygen to 1/8 liter from 1/4 liter. We're going to try to wean her slowly off that which will be nice since she's tethered to her oxygen tank (hence sleeping on the living room floor next to the big oxygen tank). Everything in baby steps. But she's slowly on her way to becoming a 'normal' baby.

It's been so long I'm almost starting to forget what it is like to have a 'normal' baby. One without a feeding tube, one without pulse-ox, oxygen, weekly doctor appointments, etc. I will be happy when I can finally be able to take her to the store or to church. Allbeit months from now since it's cold/flu season... I'm just looking forward to some sort of normalcy in our future.

Tuesday, October 27, 2009

Good News

All the lab work (blood work) came back 100% okay. Meaning, she does not have any sort of infection currently or brewing. That's great news. Her ears, lungs and throat look clear. That's a good sign.

So, her screaming episodes are probably from hunger. and she's probably hungry because she's only surviving off of minimal amounts of Pedialyte. But starting tonight (after 24 hours on Pedialyte barf-free), I can start giving her half breastmilk and half pedialyte. So that's what we're gonna do.

I've also been ordered to cut out all lactose from my diet in case her tummy isn't able to handle it. So I've been milk/cheese/butter/yogart free since yesterday (24 hours).  In her next bottle, we're gonna do the 50/50 to see how she handles it... well, I mean in her next 'tube feed', not bottle. Nothing  by mouth quite yet...for fear of barfing.

Up All Night

Todd & I are surviving off of 3 or 4 hours of sleep (not in a row, either). Scarlett was up the entire night crying, fussing, screaming, whimpering and just plain suffering in some shape or form. Then just when you think she's settled down for a little nap, she starts all over again. : (
We're afraid to feed her because she barfed again last night around 8:00pm. I waited three hours and gave her 1 ounce of Pedialyte. Then an hour later, another ounce of Pedialyte, and an hour later another ounce. She finally fell asleep 'for the night' at 2:30am (therefore I was up that entire time), and she woke up at 5:00am. I have her another ounce of Pedialyte (all through the tube), and she cried herself to sleep again.

Then I had the alarm clock set tor 6:30am to get up for the doctor's appointment at 8am. She was peacefully sleeping and I had to wake her up when I got up  (she was sleeping right next to me, that's the only way she would fall asleep at 5 this morning.)

So, now she's up again and screaming her head off and very unhappy. : (  She did have a slight fever last night 100.2, but the hospital said they don't consider it a fever until it's 101.  I really hope the doctor's can figure out what's going on with her today. Well, I mean it doesn't take a genius to figure out she's starving, but since she keeps barfing, we can't really feed her.  So I hope they can figure out why she keeps barfing. : (

Monday, October 26, 2009

Vomiting And Feeding Tube Woes

We had to put in a new feeding tube on Saturday night. But in doing so, we had to put in two because we put one down, checked for placement, and didn't hear anything so we thought it was in her lung instead of her stomach, so we pulled it out, and put another one in. It turned out that these weird new feeding tubes we have (the orange ones not the blue ones) have two openings on the end and one of the openings was not plugged. D'oh!

Well, then Saturday night she pulled it out (as I previously mentioned), so we put it back in (the same tube) again. Then on Sunday she pulled it out again and I put it back in. Sunday night when we checked for placement, we heard strange noises coming from her nose so we pulled the tube and put the last new tube we had in.

That makes 5 times we had to put a new feeding ng tube down her nose in a 24 hour period. : (

I don't know if it's related or not, but Scarlett threw up on Saturday night after Todd put the tube back in then tried to feed her. Yesterday, she threw up again. A couple of times. We called Beth [her cardiologist]and she said to monitor her and start giving her Motrin round the clock because helps with inflamation around her heart post-surgery.

Last night she was really super fussy. She went to bed pretty late (almost midnight), but then woke up practically every hour screaming (as best as she could with 85% of her voice). She was not happy the entire night. She would wake up crying and she hardly ate anything at all the entire evening. I mostly tube fed her because she wasn't drinking by mouth. This morning we called Beth again, we have an appointment tomorrow but we were so worried about Scarlett's restless night. Beth of course asked what her oxygen levels were and they were normal. We were just gonna wait and see what happens today since her sats are good.

Well, this afternoon, she threw up again. Then Todd waited a few hours and tried to feed her again and she threw up yet again, but this time it was dry heaves. Todd said it was horrible (to sit and watch her throw up), and it looked painful.  Todd called Beth and she said to stop giving her breastmilk and start giving her Pedialyte until tomorrow. She's scheduled to have a chest x-ray, echocardiogram and exam tomorrow. I hope they're able to figure out why she's not eating and why she keeps throwing up. : (

Sunday, October 25, 2009

Pulse Ox Before/After

It still amazes me to see her pulse-oximeter machine with her new numbers when compared to her old numbers.

Before surgery it was reading 74% oxygen:



After surgery it is reading 98%  oxygen:




What a difference 2 weeks makes....


Today Scarlett pulled out her feeding tube. Todd & I had to struggle to put a new tube in. Scarlett was not happy, but now she has a new tube and a new oxygen cannula (and obviously new cheek stickers too). I had spoken too soon in my last email (that she was being such a good girl and not pulling at her tubes). So we had to put newborn mittens on her as as seen in this photo:





But wouldn't you know it, she knows how to pull those off too. I can't wait until she's off of both (feeding tube and oxygen).

Saturday, October 24, 2009

Poop!

Most mothers would think I'm crazy to be so excited about a poop, but hopefully other heartmoms will completely understand why I was doing the happy dance yesterday.  Scarlett *finally* made a poop! A good poop, none of the small stuff like in the hospital...as forced to by the glycerine suppository.

She made a genuine, "old school" Scarlett poop. I was soooooo happy. Finally her bowels are functioning again like they should be. I felt so great for her. It had been almost 12 days without a 'real' poop... so I was so relieved and happy that she was finally 'making room for more'. Okay that's enough of that.

 Now on to more decent updates. She seems to be returning to her normal (pre-surgery) self. Trying to scoot around the house...or at least trying to scoot around the 6 foot radius that the oxygen tank cord will let her. Rolling over, playing with her toys, teething, biting on her freezer toys, sitting in her high chair etc.  The only thing she can't do yet that she could do pre-surgery is sit up unsupported. But that's okay, I saved her bumbo seat. I've put her in there a couple of times, but it's really hard to get her out of it since we can't pick her up by her underarms.

The hospital (and Beth) told us that for 6 weeks following surgery, we are not allowed to pick her up using her underarms. We must pick her up by supporting her head and her butt (simultaneously).  I guess it puts too much strain on their chest to pick them up by placing each hand under each underam and lifting.

She had been such a good girl about not pulling out her feeding tube, but just in case, I had her in newborn mittens to sleep at night. Tonight, though I didn't put them on. So she has no "No-No's", and no mittens, and no socks on her hands and she's keeping the oxygen and feeding tubes in. Such a good little baby. Yesterday morning I put her on the bed to watch "Yo Gabba Gabba" with big sister Violet:



She is still getting her voice back. I'd say she's 50% there. Sometimes it is very hard to hear her crying, but you know she's upset because she has tears in her eyes. She was smiling playing on the floor yesterday and making the most adorable little noises. I got a few smiles out of her.





Todd said he caught her smiling in her sleep too. She is definitely happy to be home, and so am I. : ) I'm looking forward to spending the next week with her...and hopefully weaning her off the feeding tube. I don't want to go back to work with her still on a feeding tube, that would suck. Right now when I woke up to feed her, she did take 4 ounces, so to me she's back to pre-surgery eating. But we still need the tube for her medications... so she won't puke them up. But she'll be weaned off of two meds by tomorrow, and we'll just be down to Lasix, Colace and Tylenol... and she won't need the tube for that, so we're right on track. I'm not worried about that. I would love for her to also be off oxygen before I go back, but I doubt that will happen. Dr. Lane said it will take a couple weeks to wean her off of that... but maybe on Tuesday Beth will have a different opinion. Heres's keeping my fingers crossed. : )

Friday, October 23, 2009

20-question Melodie

Sometimes I feel so sorry for Beth (Scarlett's cardiologist). I call her ALL THE TIME. I text message her. I email her. I page her...and every cardiologist visit is usually (at least) an hour long because I take my little black notebook with me full of questions that I've written down in the previous 3 weeks. After Scarlett was born and before her 2nd surgery, I saw Beth *at least* every three weeks. But most of the time I saw her practically every week or every other week, because I am a worry wart...or it was for a Eller Congenital Heart Center Family Council meeting.

Yesterday, I was changing Scarlett's diaper and I started to get worried that she hadn't pooped in 48 hours. So I breifly pause...should I page Beth?... and of course without hesitation I think... Duh... what kind of question is that? of course I'm gonna page her why wouldn't I page her?... So I start writing down my list of questions:
1. Should I be concerned that Scarlett hasn't had a bowel movement in 2 days?
2. She keeps rolling over on her tummy, is that safe?
3. How many days should I wait until I can sponge bathe her? (I know I can't submerse her in water for 6 weeks after surgery, but how long should I wait to sponge bathe her?)
4. Before surgery she was drinking 1-2 ounces per feed, 3 tops, and now she's drinking 1-2 ounces, 3 tops, so it's really nothing different...when can we pull the feeding tube?
5. I've been giving her Colace every 8 hours because she hasn't pooped and she still seems backed up...is that okay even though she's taking all her other medications?

Okay, this time I really only had 5 questions, but just ask Beth... sometimes my little black notebook has no less than 20-25 questions.  Hey, I always read that you're supposed to write down your questions and bring them with you do your doctor's appointments so you don't forget. I took those words to heart. I write everything down. ...and I am a naturally inquisitive person. I just want to know.

Last night I gave Scarlett a quasi-bath with some soapy wipes that the hospital sent home with me. My poor little baby had 3 dreadlocks! She was lying on her poor little back for so long that she managed to mat the hair on the back of her head pretty good. I had to take a baby comb and slowly and carefully detangle her matted hair. It's deceivingly long in the back (she has a major comb-over thing going on...). When I took her onesie off to wash/wipe her off, I noticed her chest looks really dry and cracked (red and irritated). So again I page Beth...Is that okay? Can I put Aquaphor on it? So like I said... I feel sorry for Beth.

Thursday, October 22, 2009

Bolus Feeding

Scarlett was sent home on a feeding tube and on oxygen. Her right nostril has two little tubes coming out of it (or going into it?). One is the nasal-gastric [ng] feeding tube and the other is her oxygen nasal cannula.

After her first surgery, she was also sent home on a feeding tube. We had to tube feed her for about 6-7 weeks post-op back in February, March, April. So we (Todd & I) are very familiar with the insertion of ng tubes, and using stethescopes for checking placement.  There are two ways you can feed a baby on an ng tube. Bolus feeding or Continuous feedings.

Bolus feeding means that you (the parent) hold a 2 ounce oral syringe and 'hand-pump' the milk into the ng tube at a rate that you think a baby would normally drink a bottle. Continuous feeding means that the child is tethered to a machine (ours was called a kangaroo Joey) that you can electronically program to pump (dispense) milk at a rate you determine ...i.e. 30mls per hour, 35mls per hour, 60mls per hour, etc..

The first time we were sent home on a feeding tube we used the kangaroo Joey (aka 'the pump') to feed Scarlett what she didn't drink by mouth. Meaning, if she was supposed to eat 3 ounces during a feed and she only drank 1 ounce, then we put he other 2 ounces in a bag connected to the pump and turned the pump on., etc. It was kind of pain. We found that Bolus feeds were waaaaaay easier, faster, cleaner and more convenient.

So this time around, we didn't even order the feeding pump from Apria. We're just going to do 100% bolus feeds.  We're old pros now, ya know...

I just woke up to pump (hence my 3am-4am blog post time) and to give Scarlett her 3am dose of Avitan (they're weaning her off of it slowly in a 4 day program). I got out my handy dandy yellow stethescope, checked for placement [shoot a puff of air through the ng tube and listen to her tummy for the woosh of air], and then down the tube, I put her meds and 3 ounces of the milk I just pumped. I did offer her a 2 ounce bottle at the same time, but she only drank 1 ounce. Her strength and endurance to eat/drink isn't quite there yet, but I'm not worried, it'll come around eventually.

I just think to myself... this too shall pass.  The feeding tube isn't half as bad as the oxygen cannula & tank, because with the feeding tube, I can still move her around wherever I want, but being connected to that gosh darn oxygen tank is a major nuisance.  In fact, when we were leaving the hospital, I just pushed Scarlett away in her stroller and completely forgot about the O2 tank and it totally fell over and made a pretty loud noise.... and I was like "D'oh!", I forgot she was tethered to that thing!

I'll end this post by saying that heartmoms whose kiddos are on long-term feeding tubes or oxygen (u know who u are)... Heaven Bless you.

Wednesday, October 21, 2009

Discharged!

We *finally* left the hospital 2 hours after my last post....drama with the prescriptions, insurance company, pharmacy...waiting, waiting, waiting...questions about feeds on feeding tube...questions about her oxygen tank..But finally at a quarter to 3, we finally loaded the Jeep and headed home.  Well, not really, we headed straight for the pharmacy, and waited for her prescriptions to be filled first... then headed home.

I almost didn't recognize my house. I've been gone for 10 days, seems like forever.  Scarlett is adjusting to being home. She's tethered to the oxygen tank... which is a major drag, so we can only take her in the living room where the "big" tank is, or our bedroom where the portable tank is.

I'll post more pics tomorrow, but I am so happy she is home again. We have a follow up appointment with Beth (her cardiologist) on Tuesday. I get to spend the next week at home with her. I return to work on November 2.

Thank you so much to everyone for your countless prayers before, during and after her surgery. :) 

Heading Home

They are getting her discharge papers. We've already been kicked out of our room, and we're in a holding room. Waiting for the pharmacy to fill the prescription which was already faxed. We'll be hitting the road any minute!! :)

Best Day Yet.

Scarlett had such a great day on Tuesday. : )  As noted in my previous post, we stopped tube feeds at 11:00am and she was able to tolerate her bottle at 2:30pm, then again at 6:00pm. No vomiting! Yaaaaaahoo!

At around 8 or 8:30pm I tried to feed Scarlett again and she didn't seem interested in her bottle at all. I was holding her and she kept wiggling, and arching her back and didn't seem to want to be held...but I didn't want to put her back in her crib either (cabin fever, ya know). She seemed agitated, so me and nurse Rhonda put her in a high chair and let her play for 20 minutes with toys I brought from home.



She kept putting her toys in her mouth and eating her hands (like she was hungry)...





...so I took a chance and opened a jar of baby food (sweet potatoes stage 1) that Todd brought on Saturday. And my adorable little baby shocked me and ate the whole thing!! It took me almost a half hour to get her to eat little bit by little bit, but she polished off the whole jar! : ) again reason to celebrate!! woot woot woot!!!


Wow. What a difference 48 hours makes.... I was even able to dress her for the first time in a week. I put a onesie on her and she looks like a "normal" baby again. (well, normal with oxygen, ng tube and an IV)






I asked nurse Rhonda when she thinks they're gonna let her go home. She's doing so much better now, and can easily be sent home on oxygen, pulse-ox and feeding tube. (which is all she has right now. Her IV drip was turned off last night when she was tolerating her continuous NG tube feeds.). Rhonda said probably in the next day or two... of course this was just her opinion tho.

My little baby had a rough time getting to sleep. She was fighting it and fighting it. She was kind of grunting like she was in pain or straining to make a poopy..(or both?). So we gave her some Tylenol and stool softner and after about 15 more minutes of whimpering, she finally settled down for the night. 

I, too, had just laid down to go to sleep right after her... when Rhonda came by and tapped me on the shoulder.. (I had barely fallen asleep minutes before). She said "They're going to let her go home tomorrow... I thought that was worth waking you up" :)  and I whispered: "yay!", and I went to sleep with the biggest smile on my face and the happiest I've been in a long time. : )...next post...Discharge! Thank you God for taking care of my precious little baby.

Tuesday, October 20, 2009

Sock Puppets

Well, she's had another barf-free morning so far. Around 11am, we turned off the continuous feeds through the feeding tube. She was up to 30ml's per hour and was still barf-free (woo hoo!).  So, around 2:30pm, I fed her a bottle and she drank 2 1/2 ounces. She didn't barf, didn't gag, and took her time. It's been almost 2 hours and she seems to be doing fine.We're just waiting to see if she's gonna keep it down for more than 4 hours. That seems to be the record...

I held her for a little while after I fed her, but she got ansy and wiggly so I put her back in her crib and sang songs to her. She rested for a little bit, but now she's gnawing on her right hand.  I took off the "No-No" off her right arm and put a sock on her right hand (to stop her from pulling out her oxygen or feeding tube.). Now she has socks on both hands. When she starts moving her arms it looks like she's playing with sock puppets. She's having a good 'ol time eating the sock on her right hand.





Right now she's happy. I actually got a smlie out of her yesterday and today. Her voice is starting to come back little by little, too. It is sooo nice to hear her adorable little coos again. : )




Oh, one last thing, she did make a small poop after they gave her another glycerin suppository this morning, so hopefully that means her bowels are gonna start moving again. All in all, she's having a good day. Way to go baby girl!

16 Hours Barf Free

Thank you for everyone's "vomit-fee" prayers. They're working. :)

We have officially been barf-free for approximately 16 hours after starting her continuous NG tube feeds.  She took 5ml's per hour for the first 4 hours, then 10ml's for the next 4 hours, then 15ml's for the next 4 hours. and is just finishing up 20ml's per hour. At 4am, we up it to 25ml's per hour.

So far she has taken in 7 1/2 ounces and is doing great. According to nurse Maria, this means we can rule out breastmilk lactose intolerance. A lot of people (hospital staff) seem to think Scarlett was in withdrawl (from the sedation narcotics she was on last week). They said it's very common. We're also still waiting for her to poop, but I am very happy that she's able to rest (from the barfing) today... and even more happy that it's not me (my milk)!. : )

Monday, October 19, 2009

No-No's


Twice now, Scarlett has used her non-IV arm (her right arm) to pull her feeding tube out and her oxygen cannula out of her nostrils. She did it yesterday and she did it again this afternoon, so now she has to wear this arm cuff called a "No-No". It prevents her from bending her arm... thereby preventing her from reaching her nose and pulling out her NG tube.


But this afternoon her alarms started going off. Her oxygen levels were getting low.  I looked at her and say that my clever little girl figured out a way to bend her IV arm too... and she pulled out her oxygen and NG tubes out again. So now she has a sock around that hand to stop her fingers from grabbing. She has a sock with a wrist rattle wrapped around it as seen in this pic:




This morning, I woke up to a puking baby. I saw nurse Becky with some syringes and I pop out of bed and accuse her "What are you doing?!", and she says "I"m giving her her medications", and (I'm still half asleep), I practically yell at her "I thought they weren't going to give her anything by mouth? I thought they were gonna put in a feeding tube and give her her meds by tube?.." I was sooooo upset. I know it's not Becky's fault and I apologized for biting her head off, but I was pretty ticked off.

Becky said "they want to try to feed her by mouth today to see how she does", at which point I went off... (poor Becky) I said "That's what they've been doing since Friday?!! and she's just throwing up!, how much more can she take?! Don't they know? Didn't the doctors tell u what happened last night? I thought she was gonna be tube fed today??!!!!",  She calmly said (because obviously it wasn't her fault, poor thing) "well, all I know is they want me to give her the meds and try to feed her a little by mouth".. and I say "Can't I protest?! I mean...as a parent, can I refuse to do that?"  and poor Becky is like... I'll let Dr. Gramaldi know. 

I did keep apologizing to Becky, I know it's not her fault... but when I woke up to Scarlett vomiting again...then realized why she was vomiting... it was not pretty. I immediately got very upset.

Dr. Gramaldi came in and I said "Did Becky tell you I had a fit?", and she's so diplomatic.."she said you had some concerns.. etc.etc.". So the three of  us decided to put down another feeding tube (her 3rd) give Scarlett her meds, then to a slow drip continuous feed through her NG tube. 5cc's an hour for the first 4 hours, then 10cc's an hour for the next 4 hours. 

She's tolerated her feeds today with no vomiting. (yay!). And except for her pulling out her ng tube and putting in a new one (her 4th ng tube in 3 days), she hasn't had any gagging or choking either.

So far so good.

We're still trying to pinpoint what is causing her to barf. There are a lot of theories.
1.) She is in withdrawl from all the narcotics she was on last week.
2.) Side effect from the Viagra
3.) Lactose intolerance from my breastmilk
4.) She actually has some sort of bug/virus causing tummy problems
5.) She's constipated/backed up and the food has no where to go until she empties her bowels

There was talk that vomiting is being caused by her gag reflex or that her gag reflex is in overdrive, but I don't believe that because she loves sucking on her binky (as seen in the pics). Also yesterday and Friay she was able to keep down (suck and swallow) 2-3 ounces at a time for up to 4 hours before barfing. If it were her gag reflex, she wouldnt've been able to keep anything down.

Little by little we'll get to the bottom of this. I'm happy that she's been able to tolerate her ng tube feeds today. Here's hoping for a vomit-free evening.

Setbacks

I hate being out of control (out of my hands/not in control) and feeling completely helpless and worthless when it comes to my baby's care. I am forced to watch her suffer and there's practically nothing I can do about it.

I can't even count how many times my poor baby has thrown up in the last 3 days, because it is so many. :(  Yesterday and last night were no different. No improvements whatsoever. She ended up pulling out her feeding tube with her finger and we were able to keep it out all day... but then when it came time to give her oral meds, we put them in a bottle and Todd tried to feed it to her. She wasn't having it..she threw it up. So, Todd slowly fed her a 'medicine free' bottle and she took  2 ounces and seemingly kept it down.  Nurse Tiffany ended up putting the NG tube back in and giving her her meds through the tube.

Yesterday evening around 9pm (4 hours after Todd fed her), I fed her a 2 ounce medicine-free bottle.  She didn't even take that much... 15cc's (out of 60cc's), then from the depths of her poor little gut, I hear it coming. She started gagging, then choking and finally completely vomited the 15cc's, and all of the 60cc's from 4 hours earlier. : (  I started to cry. I hate watching my baby suffer.

I hate throwing up myself. It takes a lot out of you. I can't even imagine how it feels to be post-op open heart surgery and throwing up 5-6 times a day. When I had my gallbladder removed last year, it hurt to cough, laugh and anything related to straining my abdomen. This poor little baby is uncontrollably, forcefully vomiting and I feel like she's practically tearing open her chest again every time she does it.

I was very upset. Dr. Underwood came in to comfort me. I don't understand why Scarlett's having these setbacks. She's so delicate and fragile, she doesn't need to be throwing up the way she has been. We tried to pinpoint when and why and what triggers a vomiting episode. No no avail. Dr. U ordered a abdomen x-ray, and nurse Nicole had already given Scarlett another suppository to try to get her to poop again. After she threw up ,we decided to tube feed her the 2 ounces and let her rest. So we did.

The abdomen x-ray showed that her NG tube was kind of in her intestines.  So nurse Nicole pulled it out a little. and said she'd be feeling a lot better once she rested. Well, shortly after we tube fed her and after the x-ray, after I had just laid down to go to sleep...she started coughing, then gagging, vomited again! Only this time she dry heaved and spit up bile. 

Everytime she barfs, her ng tube comes halfway out, then nurse Nicole gently shoves it back in.  Same thing was happening now. As Scarlett is puking up bile, out pops the tube again, then Nicole taps it back in, then Scarlett gags and dry heaves again and out comes the tube again. Then Nicole gently puts it back down, then the same thing for Scarlett....after 3 or 4 times of this I Finally say: "Do u think the tube is making her throw up?", and Nicole said: "it's possible." So we just pulled the darn thing out.....and Scarlett almost instantly fell asleep. Poor, poor baby. Physically exhausted from all the vomiting. :...(   So now I'm worried why she can't keep anything down. Either orally or via NG tube.

They had to start her on another IV drip (they had stopped it in the morning since they were going to try to let her eat again). So right now, she's resting. She is still on 1/2 ml of oxygen. They tried to wean her off of that earlier today too, even took her oxygen nasal cannula off. But she was de-sating (oxygen levels dipping into the mid 80s), so they had to turn it back on.

She did not have a good day today. I don't know if these are considered setbacks, but I just feel soooo sorry for her...and so helpless as a mother.  : (

Sunday, October 18, 2009

Feeding Tube :(



This morning right after my last blog post, Scarlett threw up again so Dr. Lane told Claude to go ahead and put a NG (nasal-gastric) feeding tube down Scarlett's nose in order to administer medication since she keeps throwing up. : (  I was heartbroken and I started crying. She was crying (as best as she could with 5% of her voice) and struggling when they held her down to put it in. I have to admit I was depressed about it. She was doing so well up until the barfing episodes. But there were just too many of them (barfing incidents) and she needs her oral medications.

We haven't actually 'fed' her through the tube quite yet, just medicines. We're gonna continue to try to feed her by mouth what she can tolerate. This morning around 9ish I was able to hold her and I tried feeding her another 1 ounce bottle (30cc's). She drank about 10cc's and started to gag, but didn't barf.  I tried again, she drank about 5 cc's more...gagged again but didn't barf. Then she rested for a minute or two.... then SPEWED again. All over her, me, the floor. But this time it wasn't as dramatic as last night.  It was only about 1 or 2 ounces, last night it was more like 4-5 ounces of vomit.

She's resting again after a rough morning. We're gonna try to feed her litte bit by little bit again.

Buddha Baby





Dr. Lane came in to check on Scarlett around 10pm and he said "Does she always sleep like Buddha?". So I had to post these pics. ; )   [btw: the answer to his question is no... she usually sleeps on her side]

Well, here's the latest update. She is not line-free anymore. : ( After her barfing episodes last night, Dr. Lane decided that we needed to put her back on an IV drip of nutrients to make sure she doesn't dehydrate. So for now, she has just one IV line in her. Claude said that while I was sleeping (between 11pm-3:30am), Scarlett woke up and he was able to feed her a small bottle and she kept it down. So that's a good sign.

No more bowel movements yet. But she just had another gagging episode at 5:30am. Claude just tried to give her a bottle and she completely gagged and sounded like she was going to vomit, but luckily she didn't. It's kind of touch and go at this point. Come on baby girl... please don't get sent home on a feeding tube!

Saturday, October 17, 2009

Barf

I fed Scarlett 1 ounce bottle at around 11:30am, and she drank fine. Then around 2:30pm, the speech therapist (Andrea) feed her again. This time she took 3 ounces. I was pretty happy that she's been doing great and barf free. Well.... I spoke too soon.

Around 6:30pm I feed Scarlett a 2 ounce bottle. Then I sat her up to burp her and before I even got to the first pat on the back...  from the depths of her stomach came projectile S P E W.  All of it. all 2 ounces I had just fed her plus what seemed like the 3 ounces from earlier. : (  All over me, the floor, her bedding, her chest wound dressings, the blanket, her cords (blood pressure, pulse-ox, heart monitor).. everywhere. Poor little baby. :(

Nurse Tiffany said it was because she's full. Meaning she needs to poop. Tiffany said Scarlett has a full tummy and full bowels, so food has no where to go. Except backward. The barf was warm and curdled and it smelled kinda bad. If I didn't love her so much and feel so sorry for her, I probably woulda barfed myself. But I just felt so sorry for her. :(

Tiffany gave Scarlett a glycerin suppository. We waited for her to poop and she didn't. So an hour later nurse Claude tried to give her some Colace (stool softener) orally, and she barfed again! The minute the syringe hit her tongue, she immediately began to gag. Only this time there was nothing to barf, so she just dry heaved. :(

Nurse Claude ended up giving her another suppository and barely a half hour ago she finally had a bowel movement. A small one. Now she's sleeping again. Claude said when she wakes up again, we can try feeding her again. We will just put the Colace in her next bottle. No more meds by mouth, her gag reflex is too great for now.

Line Free ! ! !

What an eventful morning!!! This morning in 'rounds' the docs gave the orders to go ahead and pull both arterial IV lines.  I didn't realize how monumental this was until it actually happened. Why you ask?  Well, this is absolutely great news because if you will recall from last night, Scarlett pulled out her right foot IV, and nurse Tiffany had already removed her left foot IV.  So after removing both art lines this means that Scarlett is officially LINE FREE!!!

This means Scarlett is currently not receiving any intravenous medication! She still has an IV line in her left wrist that nurse Scott put in this morning, but it isn't hooked to any medicine line/drips. yeeeeee haw! Such an important milestone!

AND.....drumroll.... I WAS ABLE TO HOLD MY BABY FOR THE FIRST TIME IN 5 1/2 DAYS!!! Nurse Tiffany brought me a chair and a foot stool, and propped my arm on a pillow and handed me my IV-free baby. I was soooooo happy. Pure heaven.

I was able to feed her another 1 ounce bottle. At first she showed no interest. I tried again in 10 minutes and she still wasn't interested. But then 10 minutes later, she drank the whole thing in 15 seconds. Yay baby girl! I was starting to get worried that she'd have to be tube fed again. But thank God she showed interest again and drank her bottle on her own.

More exciting news, while I was feeding and holding Scarlett, nurse Tiffany took away Scarlett's bed, the ventilator machine, the cerebral oximeter machine and the pole holding 10 IV drip machines. When all the equipment was gone and the room was practically empty, nurse Shauna brought in a freshly changed crib for Scarlett.

I called Todd and said I was holding Scarlett and she was tube free [well... except for the oxygen, pulse-ox, heart monitor and blood pressure cuff ; )] No more IV lines and machines associated with the IV lines, no more ventilator machine or cerebral oximeter machines in the corner. She's like a new baby and I couldn't be happier. :)

New IV Line

I woke up at 8:00am to nurse Tiffany and nurse Scott putting a new peripheral IV (IV in the vein) line in Scarlett's right wrist. Tiffany said they'll probably remove both art lines (IV in the artery) today. She gave her some ibuprofen orally, and Scarlett immediately barfed it up along with a lot of mucusy spit up. Tiffany suctioned her, then washed her off and changed her sheets. They took off her right arm restraint and also removed her cebreral oximeter. Little by little she's looking more and more like a regular baby free of tubes and wires. :)

For now, Scarlett's just kickin' back watching Mickey Mouse Clubhouse on the Disney channel.

Oooo, it's time for rounds, I need to go eavesdrop...

Sedated Again

I woke up at 4:30am to my baby crying...which is a good thing and a bad thing.  Good because her voice is coming back (yay!), and bad because of why she was crying. Nurse Jessica said that she woke up and was grabbing at her art line in her neck/collar bone. She had also kicked off her pulse-ox probe, and her groin art line was also bloody...meaning she was kicking a lot and irritated the IV site.[bad baby]

Scarlett was crying because Jessica was changing the dressing on her neck art line in her right collarbone area and she was not happy. I got up to comfort her and noticed that her cerebral oximeter probe was also taped down to her forehead, which means she also pulled that off too. [feisty little boogar]

Before I went to bed at 1:00am (after my midnight pumping), I tried to feed Scarlett a 40cc bottle. She didn't take it. She wasn't interested in it at all. I assumed it was because Jessica had just suctioned (shove a tiny tube down Scarlett's throat and used the suction machine to get any secretions in her airways) her and she was still upset/traumatized from that ordeal. Well, nurse Jessica said after I fell asleep, she offered the bottle to Scarlett again, and not only did she not take it... she threw up! (probably the 35cc bottle from earlier in the evening. :(  poor baby. Consequently her nice new clean  blanket [from my previous post] is full of barf now and had to be changed.

So after all that, Jessica put Scarlett's right arm in a restraint cuff and gave her a little bit of Ativan to settle her down. She's asleep now.

Fresh And Clean

Nurse Jessica wanted to change out all of Scarlett's linens tonight. She took all the old sheets off, then I helped her and nurse Larry put a new sheet on with new blankets (while nurse Jessica held Scarlett). Everything is now fresh and clean.




Right after we changed the sheets, Scarlett ate another 1 ounce bottle (by mouth). In the words of Todd she 'made short-order of it'. Meaning, she drank it in less than a minute. Then, she just sat there in her new sheets/blankets playing with her toys. Her new brontosaurus, her new puppy, and a few other toys that mommy brought from home. Oh... and since nurse Jessica had angled her bed to feed her, Scarlett was in a perfect position to WATCH TV... her favorite past time. She just stared and stared as happy and content as could be (of course... now that she sees something other than the ceiling to stare at, she's very happy to have tv again).




I feel asleep around 10pm, and she was still awake playing with her toys. I felt really guilty dosing off when she was still up, but I knew she wouldn't be up for much longer.  Well..... when I woke up at midnight to pump, nurse Jessica told me that while she was up playing, she kicked out her foot IV!  Nurse Tiffany had already removed her left foot IV, thereby leaving only her right foot IV, and now that one's gone too (bad baby). The good news is, since they're trying to wean her off her IV medications, it might not be that big a deal, but it's likely that she'll need a new IV line tomorrow.


Jessica just suctioned her again, and I'm getting ready to feed her another 40cc bottle. She's doing sooooo much better today.  I couldn't be more happier. : )


Here is a pic of her with nurse Jessica.

Friday, October 16, 2009

Eating Again


Around 5:00pm we were able to feed Scarlett a 1 ounce bottle of thickened breastmilk (non-fortified). She ate like a champ. Tiffany said we can try to give her another ounce in about 2 hours. For now, we're not going to fortify her milk, but I guess they'll check her weight gain and consider supplementing with formula if she doesn't gain weight.

Uncle Kevin  and aunt Kerri brought Violet back to us today (she spent the night with them last night). They took Violet to the dinosaur museum in Mesa, Arizona and bought her a little stuffed brontosaurus as a souvenir. Violet brought it with her to the hospital and gave it Scarlett.   She's still sleeping with it right next to her. It's really adorable.

Alert And Playing



After they extubated her, I pumped again and took a shower. When I got out of the shower, Scarlett was awake and alert and playing with daddy. She's still very groggy, but she had a little stuffed puppy and a piece of IV tubing about 4 inches long that she was attentively grabbing at and playing with. I was so happy to see her awake I felt like crying... it's been 4.5 days since she's been truly awake. I don't count the little 2-3 minute episodes where she gained consciousness, got super upset and had to be sedated again.

Today, she was awake and playing just like she should be...she was being a baby.  But after a little while, she started to make sad faces and you could tell she was in pain. She was wimpering and making extremely faint (but hoarse) cries. She even began to cry real tears...it was truly pitiful. I told nurse Tiffany that she was in pain and she needed medication. Nurse Tiffany gave her some morphine and now Scarlett's resting again.

She's well on the road to her old self. :)

Extubated!!


One of Todd's supervisors gave Scarlett this beautiful blown-glass Guardian Angel to protect Scarlett during her surgery and hospital stay. It has been at the head of her hospital bed ever since they brought Scarlett back from surgery. I also have the Guardian Angel prayer card that my mom gave me for Scarlett on her bed. Right now, Scarlett's resting again and listening to soft lullaby music on the hospital's portable CD player. she had a pretty eventful morning.

She *finally* got extubated (breathing tube pulled out and ventilator turned off) about 45 minutes ago! (yay!). It was pretty rough though. She was super pissed and put up quite a fight with Nurse Tiffany and Respiratory Therapist Ginger. She was really feisty and more than one nurse said "wow, she's strong!"   . . . That's my girl!! ;)  They also took out her catheter and now she'll just pee like normal in her diaper.

Now, she just has the oxygen tubes up her nose and no more ventilator tube in her mouth. Here are some before and after pictures:

BEFORE:




AFTER:


Ginger had to a lot of suctioning after the breathing tube was pulled because Scarlett sounded "junky". Which means she has a lot of built up secretion/fluid in her airways. They said they're gonna continue to suction her a lot today.

Tiffany changed Scarlett's art line (arterial intravenous line in her neck) dressing because it was getting bloody and Scarlett got super duper upset.  That was the second time a nurse said "wow, she's really strong!", because Scarlett was arching her back, and kicking and struggling. Her numbers went through the roof! and oxygen went 10 points down. Check it out:




Heart rate: 202! APB (arterial blood pressure) 97/55! Oxygen level 87!... but once she settled down, her numbers went back down. Right now heart rate is 143 (which is ideal), and her oxygen is 98 (again, ideal). ABP is 71/45 (also ideal). She's just sleeping/resting again. She had a rough morning! But she's on her way to coming home.

My Secret's Out...

The people in room 12 got discharged, so that room is empty now. Rooms 8 & 7 are also empty, so I only got to peek in room 9 tonight when I went to get my 2am glass of ice water. I think the people in rooms 11 and 10 read my blog, because their curtains were closed right now ; )  .....my secret is out.

Speaking of pumping, I just pumped 9 ounces right now! (Youch, no wonder my boobs hurt when I woke up).  They said that once Scarlett is extubated (when the breathing tube comes out), we can start tube feeding her.  So all the milk I've been making since Monday can finally be used again (yay!).  Nurse Kim (or Nurse Practitioner Courtney) said that when they do start feeding her again, it'll be a 20 calorie diet which means no more fortifying! Yippee. Now I just have to thicken her milk without having to add the formula too. I hope Scarlett is able to gain weight on just breastmilk alone...because fortifying and thickening really sucks.

Nurse Jessica just came in to reposition Scarlett and assess her. Scarlett wakes up a little bit everytime Jessica comes in to do that (every 2 hours). It is heartbreaking, because her eyes open, she stirs a little and she always chokes on the feeding tube. Yesterday evening, she even spit up a little from choking on the feeding tube. Nurse Jessica said that's a good sign, it means she's strong and her gag reflux is good even with the tube down her throat. Jessica suctioned (used a machine to help remove secretions and mucus from the airways) Scarlett a couple of times both through the feeding tube which has a suction mechanism inside of it and also with the external suction tube (like the one they use at the dentist office). Scarlett had a few secretions (loogies/mucus) in her lungs and airways. Since she can't cough to get these out, that is why nurse Jessica has to 'suction' them out.

And let me tell you.... Suctioning SUCKS! (pun intended). Literally and figuratively. Watching your baby gag and choke because a tube is being shoved down their throat through a tube that's already down their throat is miserable for the baby and heartbreaking for the mommy to witness. But thank goodness Jessica was able to get the loogies out when she suctions Scarlett.  Otherwise the mucus can stay in her lungs, and she could get a lung infection or worse...pneumonia.

So, everytime she's suctioned, Scarlett gags, chokes and her face turns colors. It was the same Wednesday night too. I still haven't heard my baby cry since Sunday, and you can tell when she wakes up she wants to cry but no sound comes out. Jessica just gave her a half dose of Morphine (pain medication), and Scarlett settled back down and went ni-night again.

Todd is spending the night tonight, so I let him have the couch/bed thing I've been sleeping on since Monday which in and of itself isn't terribly comfortable but when compared to the 'hospital cot' a.k.a 'roll-away-bed' that I'm sleeping on tonight it makes the couch/bed seem like a Tempur-Pedic Memory Foam matress (super duper comfortable mattress).  My Golly! I woke up in actual pain from sleeping on that cot. My back, my arms, my legs, my sides, my tummy felt like I'd been beaten with a meat tenderizer. It's more like a torture contraption than a bed. Thank heaven Todd usually doesn't spend the night, he usually visits during the day then goes home to be with Violet at night. But tonight Violet is spending the night with uncle Kevin and aunt Kerri. I don't mean to sound like such a complainer, but seriously... that bed is NOT comfortable. I miss my bed at home.

Well, I know I've been saying it everyday for 3 days now, but I really think she's gonna be extubated today (Friday), so I'm knocking on wood, and keeping my fingers crossed.

Thursday, October 15, 2009

Chest Tubes Out

Nurse Kim and Nurse Practitioner Courtney removed the last two chest draining tubes today. Next on the agenda... breathing tube. Maybe later today, maybe tomorrow.

I'm A Hospital Peeping Tom

Scarlett's hospital room is on the 7th floor of the patient tower at St. Joseph's Hospital. The 7th floor only has one wing which is exclusively the Pediatric CardioThoracic Intensive Care Unit (PCTICU). The wing is shaped like a triangle and there are 24 rooms, 8 on each side. There is a full sized refrigerator next to an ice/water machine located in the corner between rooms 8 and 9. I'm in Room 13.

Everyday, a few times a day I walk down to the ice/water machine to fill my cup with ice water. I have to walk past rooms 12, 11, 10, and 9 to get to the ice machine.  Then back again to my room. Each time I leave my room, I have a choice to just look at the nurses, look at the floor, look straight ahead, or look at the 'other' side of the wall.....but do you think I do that??? noooo.

Everytime I leave my room, curiosity gets the best of me and my head immediately turns to the left as I walk down the hall and I subtly/casually (although obviously blatantly) peek into their rooms.  I try to see... Is the mom in the room? Or is the baby all alone? Is the baby sleeping? or awake? How old is the baby? Are they on a ventilator? What are they watching on tv? Why are their alarms going off? Does the nurse hear the alarms going off? Why are they crying? How long have they been here?

All this on my 30 second walk to the ice/water machine. Then the same thing on my 30 second walk back to my room. I concur that I am a 'Hospital Peeping Tom'. But hey... if they don't want me peeking in, then they should close their curtain, right? ; )

No new changes on Scarlett. She had a good night. I'm waiting for rounds (when the doctors stop at each patients room to talk about treatment for that day) to find out whether or not they're going to try to take her off the ventilator today.

Missing My Baby

I woke up for my 2:30am pumping session. I asked nurse Jessica if there was anything new, she said that everything was the same. Scarlett's just sleeping. No unexpected crazy awakenings like last night. She's doing really good and getting the rest she needs. The Ativan (sedative) is working a lot better than the Versed did and the Sildenafil (Viagra) seems to be working.

I'm barely going into Day 4 of not being able to hold my baby, and I'm already missing her a lot. I wanna hold her and kiss her and feed her and play with her. I want to hear her voice. I miss her cry, I miss her giggles, I miss her attentive listening, and her curious facial expressions and stares. I want to change her diaper, I want to give her a bath. I want to feed her in her high chair. It's starting to get to me...seeing her unconscious all....day.....long. It's only been 3 days.  I'm such a wuss.
 
Especially when I think about the heart mommies who have lost their CHD (congenital heart defect) babies, I feel really guilty for missing my 'alive' baby. I know one day soon I will be able to hold her again and play with her again, but I've become pampered and spoiled being able to be with my CHD baby...that now that I can't be with her, I miss her. But then I think about the pain and agony and aching that the heartmoms of CHD angels feel everyday with no respite in sight, and I feel bad that I miss my baby who is just sleeping.

But guilty feelings or not, the truth can't be denied.  It hurts me to see my baby not being able to be a baby.  No mom or baby should have to go through this. :(

Wednesday, October 14, 2009

Slow And Steady

Dr. Willis came in earlier and told us she looks good and is doing good. He said: "So, they told u we're not extubating her today?", and we said "yeah", and he said "Do you have any questions?", and Todd said "no", and I said "Yes".... hello, have we met?? Obviously no one warned Dr. Willis about 20-question-Melodie. ; )

So I ask him, what's the difference between yesterday and today...why was she waking up so much yesterday and not so much today? He said yesterday they were trying to wean her off the ventilator, therefore they were lowering the sedative dose, and therefore she was waking up. Except when she woke up, they weren't expecting her to become agitated thereby causing her lung vessels to constrict and for her numbers to get high (blood pressure, etc) and oxygen to get low. (which I kind of knew already)

He said that they started giving her the Sildenafil  (aka Viagra..see previous post) last night to try to stabilize the bloodflow in her pulmonary (lung) vessels. He said it can usually take 1-3 days for the drug to get in the system and begin to really work. My next question was "Okay, if the Viagra (sildenafil) helps keep her pulmonary vessels open then what happens when she's released?", and Dr. Willis says "Oh, we're going to send her home on the Sildenafil"... and I'm like... ah crap. :(  Not what I was hoping to hear, but oh well, who am I to complain?

Then I asked "So, today you're going to let her rest, let the sildenafil do it's thing, then tommorrow try to extubate (take the breathing tube out)?", and says "yes".  So, all day today Scarlett's just been sleeping and resting. Nurse Becky said that she's woken up a few times when she comes in to assess her, but she just barely opens her eyes, moves a tad, then immediately doses off to la la land again. Unlike yesterday with the "wigging out" episodes every few hours. She's much more peaceful today.



My daughter Violet has an "Elmo's World" DVD called 'Opposites'. It has 3 ten-minute shows on it: up/down, open/close, and fast/slow. In the fast/slow segment, they do a Tortoise and The Hare analogy. The tortoise says and repeats "Slow and Steady", while the hare is running running running. One of the heartmoms commented on my last blog post "Slow and Steady", and I really liked it, because it aptly describes Scarlett's recovery. Sleep well my precious little princess... all in good time. :)

Extubation Tomorrow...maybe

The respiratory therapist (Catherine) just came in and said that 'no one is comfortable with weaning her today'. So basically that means at least 24 more hours on the ventilator. They want to give her body a chance to rest from all the waking up she did yesterday and all the stress her pulmonary vessels endured everytime she woke up.

They also want to give the Viagra a chance to work (to dialate her pulmonary vessels) so that when they wean her off the sedation medication, her lungs don't constrict and her pressures don't get out of control like they did yesterday.

She's peacefully resting right now. They switched her sedative medicine from Versed to Ativan this morning hoping she'll rest a little more comfortably for a longer period of time (instead of waking up every hour for another shot of Versed). Right now a lab tech is in the room doing an echocardiogram (ultrasound of Scarlett's heart). Just to get a picture of the pressures of the cardiac veins/arteries and overall pumping function of Scarlett's new heart.

Hang In There, Baby!



Every time my mom calls me to ask how Scarlett is doing I say: "She's hanging in there...", and my mom always tells me she thinks of this retro-poster from the 1970s. So I wanted to post this picture for her.

Scarlett is still doing pretty good. Her numbers are great. She's peeing really good, and they already took one chest draining tube out! Only two more to go.... They also removed her bandages on her incision site to let it dry out with room air. Nurse Becky said they always remove the surgical dressing after 48 hours.  Her scar doesn't look too bad at this point. Hopefully it will be very faint like her first scar from her first surgery.

Will post again when/if the breathing tube comes out.

Balancing Act


I have to have complete faith in the doctors and nurses at St. Joseph's Hospital and Medical Center 7th Floor Pediatric CardioThoracic Intensive Care Unit (PCTICU) in Phoenix, Arizona. ....blind faith.

Scarlett's blood pressure goes down?... they increase her intravenous fluid. The fluids build up, she gets puffy, and not she's peeing as much as she should?... so they start her on a diuretic (drug to make her go pee). They want to keep her drowsy?... they increase her sedative. They want her to gradually wake up?.... they decrease her sedative. She's struggilng to breathe on her own?.... they turn up the ventilator.   She seems to be doing great on breathing?..... they turn down the ventilator.  Her body temp is getting a little on the low side?.... They put a blankie on her. Body temp starts to creep up?... take the blanket off. She's waking up, freaking out, her numbers are all outta wack?.... They increase sedative, increase oxygen, and gently calm her down. It's all a balancing act, which they perform extremely well.

Whenever she wakes up, her numbers drop, her blood pressure goes way up. Mommy can't calm her down, because mommy's voice turns Scarlett into the Incredible Hulk.. and she wants to tear off her restraints, pull out her tubes and jump in mommy's arms.

We'll see how today goes. I hope they're able to get the breathing tube out today and turn off the ventilator (CPAP). I will keep posting throughout the day.

Viagra (For Babies?!)

Thank God for blogs. Because I recently read on another heartmom's blog (God help me, I can't remember who..), that their heart baby was put on Viagra to help them try to open up the veins in their lungs. This heartmom said that evidently Viagra was originally manufactured for cardiac patients...(possibly following open heart surgery?), and that an interesting side effect of keeping the veins open happened to be male arousal (sustained erections), because the blood in the veins in their ding dong were also kept open(?)  Seriously, I'm not making this stuff up... I swear.

Anyway, I woke up to pump and asked how Scarlett was doing. I went to bed around 9:45pm and woke up at 1:15am. Nurse Maria said that around midnight she gave Scarlett a dose of Viagra. So, like I said thank God for blogs cuz I already knew it wasn't completely *wack* of them to do that. Otherwise my reaction woulda been completely different... like WHAT THE?.....So, Maria asked if I had heard of that, and I said: "Yeah, I read it on a heartmom blog".

Maria said that all day yesterday anytime they'd decrease the sedation medication and Scarlett would wake up, her pulmonary veins (veins in the lungs) would "clamp" and her numbers would drop and her oxygen saturations would plunge, and she'd get all freaked out [yes I witnessed this several times yesterday]. Maria said its not uncommon for them to do this (put patients on Viagra). So far, she's only had one dose at midnight. She'll get another dose at 6am, then again at noon. She said it will help for when they try to extubate (take the breathing tube out) her later today.

Tuesday, October 13, 2009

Robotic Milking Machine

Last night during my 2:00am pumping session, I was internet surfing and googling how much milk a dairy cow produces in a day. I myself have been pumping anywhere between 25-30 ounces per day. Turns out a dairy cow pumps 5-7 gallons per day. Cows are milked using something called a "robotic milking machine". Call me silly, but I was so tickled when I read those words. 'robotic milking machine'. I did a little self-reflection and thought... that's me!! I'M A ROBOTIC MILKING MACHINE! I don't even consider myself human anymore, I'm just a milking machine for my precious little Scarlett.
Well, it turns out that my breastpump is the actual 'robotic milking machine', and the machines that dairy farms use on their cows (the ones we all saw on Sesame Street), are called robotic milking machines.  Same concept...me and the cow.

Anyone who reads my Facebook posts knows that 85% of my posts are made between the hours of midnight and 4:00am when I'm up pumping. and my posts are often about dairy cows, breastfeeding, breastmilk, pumping, etc.. Today's blog entry is no different. Bear with me...

Expressed breastmilk and I have a long history together. It's kind of a love/hate relationship. I am not able to and have never been able to nurse Scarlett. So since day one (Feb. 17), I have been pumping...and pumping, and pumping..and pumping. Everyday. Sometimes 5-6 times a day... Sometimes 3-4 times a day. Depending on how much milk I want to make that day, I can increase my milk supply, or decrease my milk supply. It's facinating, really.

Why can't I nurse? Let me tell you a couple of reasons. 1.)When Scarlett was born she was on a feeding tube in the NICU. I pumped my milk and took it to her in the nursery ICU where the nurses fed her through a tube. Then after her 1st open heart surgery we tried bottle feeding her, and she kept coughing/choking. They did a modified barrium swallow study and found out that Scarlett was aspirating her food. 2.) So every bottle from that day forward had to be thickened with an agent called "Simply Thick". 3.) Then because she's a cardiac baby, her breastmilk has to be fortified (I have to add a scoop of formula to every 4 oz of breastmilk), to increase her calorie intake to keep her weightgain steady.

So, everytime I pump... it's the same routine... I pump milk into 2  four-ounce bottles (using my medela Pump-In-Style double breastpump), then after I pump I pour the milk into an 8 ounce bottle (it's usually anywhere between 6-8 oz). Then I put a scoop and a teaspoon of Nutramigen in the breastmilk bottle and shake it up. Then I put this 8oz bottle of 'fortified' breastmilk in the fridge. I make about 4 or 5 of these a day. Then once a day, I get out 3 or 4 empty nine-ounce bottles.  I take the 4 or 5 fortified bottles out and I make my "Fortified/Thickened bottles". Which is... 8 ounces of fortified breastmilk, plus two .5oz packets of Simply Thick (nectar consistency). Whew...what a pain in the butt that is.... and believe me I know... I do it everyday.

So you're probably asking yourself... what's the point of all this??  Well, yesterday morning I packed the last 6 bottles (each one was 6-8oz) of Scarlett's fortitied breastmilk plus one bottle of the fortified/thickened milk.  Yesterday during her surgery, I asked one of the nurses if I could put the milk in the fridge... then I said...oh wait a minute... fortified BM is only good for 24 hours, right? and the nurse says..right. So I ended up having to DUMP around 40-50 ounces of fortified breastmilk (aka 'liquid gold') yesterday. That's not the point, but I'm getting there... are you still with me?....

So this same nurse (Nicole) says Scarlett probably won't be able to eat for several more days... this was yesterday. So I get depressed. Having to throw my milk away and all and knowing that Scarlett won't be able to eat for days. So yesterday afternoon (around 12noon), I pumped and I only got a measly 5 ounces. I was bummed. I thought... wow, my milk supply has decreased because I'm so stressed out. :(

I put the milk in my storage bags and hand it to Nicole and said "Here's a little milk, it's not that much". Because to me.... 5 ounces is nothing, when I know I can pump 8 or sometimes 9!... Well Nicole says to me "Not much?, that's a ton!" and I raise an eyebrow and say "5 ounces aint nothing, I usually pump 8!"  She says, I usually only see 2 or 3 ounces, so this is a LOT".  My spirits were immediately lifted. Because to me, it was very little, but to her 5 ounces was a lot!

Sure enough the next time I pumped I got 8 ounces. Back to the norm. I am a robotic milking machine. and I rock!  BTW: No changes on Scarlett. I'll post more around 2 am during my next pumping session. Thank u for reading and bearing with my rambling. :)

Still Intubated



This morning they were talking about her ABP (arterial blood pressure) being a little lower than her NBP (non-invasive blood pressure). Scarlett has an IV line in her neck/collarbone going directly into an arterial vein which constantly measures the blood pressure directly from the artery in her heart (ABP).




This pic has her ABP at 56/43 (red color).  That measurement has been on the low side all day today and all night last night. But, the blood pressure cuff on her arm (the NBP) which is taken intermittently reads slightly higher in this pic it reads 74/46 (purple color). Evidently there's a disconnect somewhere. They wanted to get a new art line in her to see if it would read the same as the current one which is reading lower than the NBP.


But alas, after many attempts they decided to just keep the art line they already had. Her blood gases (measurement of pH in the blood, carbon dioxide & oxygen pressures, and bicarbonate levels) are great, and she is showing no other signs of distress from having low blood pressure.

Daddy brought big sister Violet to visit baby sister Scarlett today.



Violet says "Scarlett has a boo boo on her heart. We have to take care of her. She's sick".  They didn't stay very long, but we wanted Violet to be able to see her sister, and for Scarlett to hear her big sister.


Scarlett was doing very good earlier this afternoon and there was even talk of extubating her today (taking out the breathing tube and getting her off the ventilator), because she was taking breaths on her own and the ventilator was only being used as a backup. They were slowly decreasing the amount of work the machine was doing (lowering the setting on the ventilator) throughout the morning/early afternoon.  But then when they attempted to turn off the machine 100%, Scarlett got agitated, her nostrils started flaring, and her oxygen levels dropped low. So, Dr. Willis said that we'll keep her on the ventilator one more day and try extubating her tomorrow. It was just too much work for her and we don't want her working too hard.

Nurse Becky and respiratory therapist Ginger have been taking good care of Scarlett all day today. Trying to get her extubated, and calming her down when she wakes up, etc. And yes, she's woken up a couple of times today because they decreased her sedative when they were trying to extubate her. But when she wakes up she starts kicking her legs and tries to move her arms, but they're in restraints. Did I mention that being on the breathing tube also means she can't cry? Well, yeah, she cries, but she doesn't make sound. : (

Here is a picture with her day nurse Becky.






Low Blood Pressure


Throughout the night and early morning Scarlett's arterial blood pressure has been on the low side. Just a tad low. They want it to be in the 70-80's over 40-50's. Hers has been in the 60-70's over 40-50's, which is okay. But when it dips into the 50's over 40's, the nurse calls the doctor. Nurse Maria did it last night and early this morning (she called the Dr when Scarlett's ABP dipped and stayed in the 50's), then about an hour ago Nurse Becky called the Dr again.

Both times the Doc asks them questions (about her other numbers/sats), then the Doc tells them to give her more fluid. I guess intravenous fluid helps the heart blood pressure come up. Each time they give her fluids her APB comes back up to the mid 60's over 40's. 

In the pic above her ABP is 66/48 (in red).  Ah... but take a look at her oxygen levels (in blue)...98!!! yeeee-haw! Her pulse (in green) is 132 which is great. Overall, she's doing "rock solid" as Maria said this morning.  I am soooo happy....even if I'm a little worried about her low ABP.

They're gonna continue to keep her sedated throughout today to give her poor little body a rest from the 7 hour surgery she had to endure yesterday. She is still intubated (on a ventilator/breathing tube), and will still be all day today. Maybe tomorrow they'll try to wean her off of the ventilator.

She's woken up a couple of times and everytime she does it's pretty obvious....because Ding! Ding! Ding!, all her "numbers" get all wacko. Her numbers go up (pressures/pulses) and her sats (O2 level) go down. So, they're gonna keep her nice and sleepy all day today.