Moving

Sofie's pain has been much better controlled with her epidural since they increased it. They were even able to discontinue her fentanyl drip, so she's just getting IV Toradol (a NSAID like ibuprofen only BETTER) for pain every 6 hours along with her epidural for pain control. She's been able to rest much better today and has slept quite a bit. We've even seen a couple of tiny smiles!

They also took out her arterial line, because she didn't need it anymore. They will leave the chest tube in for at least one more day and her foley catheter will stay in until they turn her epidural off. Her IV will stay in place until she's tolerating oral feedings and her pain is well under control with oral medications.

They just came in to clean her burn. It looks like a 2nd degree burn. It looks pretty big and nasty right now. I'm thinking it's going to leave a pretty bad scar, but it looks like it will heal on its own without a skin graft. She actually tolerated the burn care much better than I thought she might. It was really quick. They just washed it out vigorously with soap and water and then covered it with bacitracin (antibiotic) ointment and a bandage. We need to do that once a day and it should heal in a couple of weeks or so.

She has good bowel sounds, but she still isn't allowed to eat. Maybe tomorrow. They want her gut to be good and ready for food before she tries anything to avoid other problems. I'm very anxious/nervous to see how she'll do with feedings now, since her anatomy is sort of "brand new". I'm so hopeful for good things in the feeding department, but also really nervous. It will take some time to tell if things are going to be different.

I saw her chest xray and it looks fabulous! It's such a nice clean looking xray. Both lungs look well expanded. They are still just a touch "wet" looking just from being freshly post-op and having been on the vent. That should clear within a day or so. Her left diaphragm is nearly even with the right diaphragm now. Ever since her first reherniation her left diaphragm, even after repairs, had remained about 2 ribs or so higher than the right. Since her first recurrence, she's also still always had a hiatal hernia after her repairs, and that's gone now - no more herniated stomach bubble on the xray!

It clearly looks for the first time since her NICU days that everything is undoubtedly down in her abdomen where it's supposed to be and cleanly sealed off by her diaphragm. Even after her last repair, there was some shadowing in the mediastinum that looked like possibly the tail of her pancreas and maybe stomach and/or bowel. It was ambiguous whether or not that's what it was or not, but since her xrays remained unchanged from November to January and it didn't seem to be causing her any problem, it seemed okay.

Since her herniation this time was posteromedial and stomach, bowel, and pancreas were found in the mediastinum, it's pretty safe to say that's what it was back then as well. Over the time period from November to now, I think everything very slowly slipped up through that place into the mediastinum. Because of the type of surgery last time, Dr. S.P. was not able to visual the area around the mediastinum well, so she could have had a tiny herniation there since that time that went on ahead and slipped through since her last repair. I hope I'm making sense? ;-0

Yesterday, Dr. S. had good visualization of the entire area around the diaphragm, so I feel confident this will finally be "The Fix." I hope. I hope. I hope. I hope.

We have orders for her to be transferred to the floor this afternoon, so maybe she will sleep a little better tonight.

Long Night

Our mighty little Sofie didn't have a very restful night. She's still very stable, but her pain was not well controlled last night. The epidural wasn't working very well for her, and the fentanyl drip is such a fast acting medicine that it hasn't provided lasting relief. She whimpered on and off all night, waking up and crying every time a little sound startled her.

Her pain was pretty well controlled until between midnight and 1:00 am. From there it has progressively gotten worse. She just had a pain consult this morning, and they decided to increase both her epidural and fentanyl drip. I was asking for something longer acting, like morphine. They said if the increase in these meds doesn't help, they will give her morphine. As soon as her pain is under control, she will be transferred out of the PICU and to the floor. Great! I always dread being in the PICU, it's very depressing - much worse than the NICU.

The most amazing news is that she's already down to 1/4 L oxygen by her nasal cannula. Once her pain is better controlled, I think she'll be able to breathe deeper and will be able to be on room air. So we're looking at possibly room air on her first post-op day..she is such a little miracle baby!

Dr. S. came by and said her morning chest xray looks fantastic and both lungs are expanded well. He told us yesterday that her left lung is actually pretty good sized, about 8-9 ribs. Wow, huge, but I believe it doesn't function very well. I think it's really dysplastic and hypoplastic with few aveoli for gas exchange. Maybe now that it finally has adequate room it will function better.

Hoping for better pain relief and a more restful day. I'll update with any changes!!

The Rundown

Sofie is sleeping pretty comfortably now and we are kind of settling in for the night. It's been a long day and we're all tired. The goal for tonight is just to manage her pain so she can rest. Here's a recap of our day...

We got here at 8:30 this morning to check in. They did vitals, went through her history and physical, and went over consents (again - we are pros at this). We saw several people. By 10:30 they were taking Sofie back to pre-op for her IV with a little sedation to help her anxiety.


Getting ready.




We all went to the surgery waiting room and waited 7 very long hours to see her again. I missed my baby!



Here's a pic of Daddy and Grandpa waiting.




The surgery itself took 4 1/2 hours, quite a bit longer than anticipated. Dr. S. (her surgeon today) was pleased with how the repair went. She had a good sized muscle flap to use as her new diaphragm that allowed for really solid coverage.

Her reherniation this time was more posteromedial, meaning her patch had pulled away around the back edge toward the middle of her chest. Her abdominal content had then herniated into the mediastinum, which is the space in the middle of the chest between the lungs where the heart is. Her stomach, bowels and the tail of her pancreas had herniated into this space.

The surgery involved making a new, large incision around her left side and back to dissect a flap from the latissimus dorsi muscle. The herniated abdominal organs were placed back in their appropriate places. The muscle flap was then layed in place to create a new diaphragm for her.

Her original Alloderm patch was highly vascularized with new tissue growth throughout. He removed anything non-absorbable that was left from her old repairs and then attached her muscle flap all around to existing tissue. He was able secure it all the way around, even up to the mediastinum. This should give her a really secure new diaphragm.

He was also able to hook up the major nerve from the muscle flap to the phrenic nerve. The phrenic nerve is the one that innervates the diaphragm and is responsible for making the diaphragm work. She's always had a normally functioning phrenic nerve in her right diaphragm. The hope is that her new left diaphragm will develop some function now as well, and not only serve as a barrier between her chest and her abdomen, but will also help with work of breathing. Dr. S. said this works about 50% of the time and it will be 6-12 months before we know if the nerve in the muscle flap is working.

Since she had a good sized muscle to work with, he was also able to secure it nicely all around her esophagus, thereby reducing her existing hiatal hernia. We hope this may help with her reflux, maybe even to the point she can stop taking antireflux meds after she recovers. In any case, this should help her to be more comfortable after eating, even if she still has some reflux. So that, in turn, may help her eat better since she won't associate eating with discomfort anymore(hopefully).

She tolerated the surgery very well with average to minimal blood loss, so no blood transfusions were necessary. Her color post-op is nice and pink and her vitals are all very stable

She came out of surgery on the vent, but they were able to extubate her in recovery. Yay! This is a HUGE deal!! We never in a million years expected her to come out of this major surgery off the vent. Plus the surgery lasted twice as long as expected, and she's still recovering from her cold and cough, making it even more unlikely that she'd be able to breathe on her own after surgery. We fully expected her to be on the vent for a couple of days post-op, so we were beyond thrilled to see her with just a nasal cannula after recovery. She is the toughest baby ever!


Sofie in her PICU bed.

She's been on 2 L of 100% oxygen by nasal cannula since recovery and her sat has been 100% the whole time I've been with her. I don't think they are going to try to wean her oxygen down tonight. Nothing too aggressive in the plan for tonight, just rest and pain management.

She has an epidural catheter in place with epidural pain medicine running on a pump to control her pain from her surgery. She also has a fentanyl drip going to help with pain as well. She seems very comfortable right now, other than the occasional whimper.

She has a foley catheter in her bladder to measure urine output, which has been great so far. She actually has very minimal swelling. It's mostly in her hands. She usually swells quite a bit with surgery and intubation, so this was good to see this time around.

She has a chest tube in place coming out of her incision to help drain any excess fluid buildup from the surgery. All the manipulation of everything during surgery causes oozing of blood and other fluids in the body. The chest tube allows that to drain out, instead of accumulating in the chest and pressing on her lung.

She has her peripheral IV in her foot for the fentanyl and for IV antibiotics. Typically IV antibiotics are given until the chest tube is removed, and they are also typically given post-op just prophylactically to help prevent infection.

She also has an arterial line in her foot for continuous monitoring of her blood pressure and for easy access to obtain blood gases if needed.

The only complication from surgery was a burn to the back of her left shoulder. They used metal chest spreaders to keep the incision open when they were working. They place sponges between the metal and the skin to keep the metal from coming into contact with the skin. All throughout surgery, electrocaudery is used to cauderize little bleeders to stop excessive bleeding. Metal is very conductive with the electrocaudery and the chest spreaders ended up being in contact with the skin on the back of her left shoulder during the surgery. When the electrocaudery touched the metal spreaders, the electrical current was conducted to her skin, which left a burn on her shoulder.

We only saw it briefly, but it's a line of blisters about 2 inches long and about 1/4 inch wide. A nurse from the burn unit came in to talk with us in the PICU to say she'll be caring for the burn while Sofie's here. It will leave a scar, but hopefully not a bad one. This is why she has the continuous fentanyl drip in addition to the epidural, rather than just PRN pain meds for breakthrough pain.

I don't want to jinx it, but it seems like her recovery from this surgery may go much quicker than we originally thought, maybe a week or so. We are so anxious for her to feel better and for things to get back to normal for us all.

Thank you all so much for your prayers and positive thoughts, it makes such a difference!!

Resting in PICU

We got to go into Sofie's PICU room around 7:00 pm to see her. She looks really good for what she's been through. She's so tough! She'll be staying in the PICU for a while, but hopefully not as long as we originally thought.

All of her Grandmas and Grandpas are taking turns seeing her right now. Only one of us can sleep in her room at night, so we'll trade off for the recliner at her bedside.

She's resting fairly comfortably with a few wimpers here and there. I can tell she really needs some snuggles, but we can't pick her up yet. She has an arterial line and a chest tube, as well as a peripheral IV and her epidural in place. Once the chest tube is out, we'll probably we able to hold her.

I'll update more later. Thanks for checking in and praying for Sofie today!!

Tomorrow's Surgery Updates...

I'll be texting quick updates about Sofie's surgery tomorrow from my phone that will show up instantly at the very top of the sidebar on the left side of the blog. This means that all of you Google Readers (like myself) will actually have to check the blog tomorrow for frequent updates. This way we can get word out quicker without having to sit down at a computer or type an email via iphone when we are more focused on being with Sofie and making sure she's okay. Later, when we have more time we'll write actual post updates like usual. Thanks for the suggestion, Chelse!! Want instant Sofie updates sent directly to your phone? Click "Follow me on Twitter." From there you're on your own, I'm not much of a Tweeter! ;-)

We're on the Schedule

The hospital called this morning and Sofie is scheduled for her surgery tomorrow around 10:00 am. Hope it actually happens this time!

We were pretty miffed at the whole cancellation last Friday, but Friday night Sofie's cough got worse. Kenny got a humidifier for her Friday night, and it has helped her to not cough as much at night, so she's slept much better since then. It really loosened everything up and on Saturday her lungs actually sounded pretty junky and she had some expiratory wheezes. She was still satting 98% and above on 1/2 L, but I ended up being glad the surgery had been postponed. Yup, I'll say it. I was wrong. Anesthesia was right.

Anesthesia can sometimes be a PITA, but I must say (even at my own job) they usually have very good reason for what they do, and 99% of the time I agree with them and think they are making the best decision for the patient. Sometimes a lot of feathers get ruffled, but in the end the patient's best interest is at heart. We were upset on Friday, but now I feel it was the best decision to wait.

To add to our weekend drama, we had an oxygen tank mishap. You know Friday we came home unexpectedly and needed a big oxygen tank on rush delivery. Apria brought one out Friday evening. I worked all night Friday and then came home and slept until about 1:00 or 2:00 on Saturday. Everyone here (except Sofie and I) went to the Royals game Saturday night. :-( We missed out.

But back on topic, I looked over at the gauge on her tank around 6:00 pm Saturday, and it was almost EMPTY. It was just a hair above the big goose egg mark. I flipped. There was absolutely no way we used an entire tank in just 12 hours. Those tanks last a week or more. Long story short, Apria had delivered us a near-empty tank on Friday by mistake and no one had checked it before me. Luckily the on-call person was able to bring another one out Saturday night. I'm none to happy about his situation. I can't believe they don't check their tanks before sending them out to patients. This comes, of course, after two different sat monitors they sent in January left burns on her toes that scarred. Not happy.

On a better note, her lungs were clearing by Sunday. Yesterday and today they sound nice and clear. She does, however, still have a productive cough and runny nose. She's on day 9 of a 10 day antibiotic course today. Thank goodness for Dr. Y.!

So....she is still in the same condition as last Friday as far as having a cold. Except that now her cough is productive and on Friday it wasn't. But she will have also completed a 10 day course of antibiotics tomorrow. I'm not holding my breath for this surgery to happen tomorrow, but at the same time I wouldn't be a bit surprised if they do it without any qualms. Maybe the third time is a charm.

Happy 35th Anniversary, Grandma & Grandpa T!!!

Make a Smilebox greeting

We Came, We Saw, We Left

RATS, No Surgery!

Grrrrrrrrrrrrrrrrr ANESTHESIA!!!!! Okay, I'm better now. So after stressing about this surgery for a week, getting everything squared away at home, making arrangements to be off work, and our family doing the same - Sofie's surgery has been cancelled.

We got all checked in, gown on, vitals done, consents signed and then had to pack up and go back home. Thank goodness they didn't start her IV before they made the decision not to do the surgery! Anesthesia decided she wasn't healthy enough for surgery because of her cold. The SAME cold she had last week when everything was a go, except that now she's been on 5 days of prophylactic antibiotics. This is totally a liability issue. I want them to be safe with her, and I know they are just trying to look out for her best interest, but seriously, a week ago they were fine with it.

We also expected to be sending the oxygen tanks back for good after this surgery, so we have a bunch of empty tanks sitting at our house on a Friday afternoon. We are (by the skin of our teeth) getting a new tank delivered early this evening. Until then she's got a couple of portable tanks.

Thankfully I have an awesome boss that's letting me come back in to work tonight, even though I had already requested vacation for tonight. I work weekend option nights, so I get very little vacation time for the year. Taking tonight off was blowing almost half of the vacation time I have saved. And if I have to be off, like in this kind of instance for surgery then I have to take vacation time in order to keep my benefits. If it wasn't for her, I'd probably be out of a job and out of insurance after everything that's happened in the last year. Thank you for being so understanding, Kathy!

So we're back home and she's taking a bottle since she's been NPO since 2:00 am and then hopefully a nice long nap. At least the house is clean and all the bills are paid! For now, the tentative plan is for Sofie's surgery to be next Wednesday. We are waiting for someone to call and set it up. Thanks for all the extra prayers today!

Hugs

Sofie's RLD flap repair surgery is scheduled for today at 1:45 pm. We will be heading into the hospital sometime this morning. She's still on 1/2 L oxygen at home and doing okay. She still has a pretty bad cough, but no fever and her lungs sound clear, so hopefully everything will still go as planned. Please say some extra prayers for her today and in the coming days for a quick recovery.

We're gearing up for our busy day and we'll be sure to keep everyone posted, but here's a little video from a couple of weeks ago to start the day off right...

Sofie's been really big on hugs the last month or so. When she's in the mood for hugs, she hands them out by the dozen. It's so cute.

Here's a video of her giving Daddy a quick hug before moving on to pat-a-cake, which is currently her favorite game. She'll start it on her own and go through the motions of clapping, "rolling it", and "marking it", even when you're not saying the words with her. She does it all the time, and it's very cute! I'm still trying to capture it on video though. She's such a ham for the camera that when she sees it, she gets distracted and stops whatever I'm trying to catch her doing.

Sofie's Favorite Things II: Fluffy Bumwear

It's time for a light hearted post. So I give you...the 2nd edition of Sofie's Favorite Things...

Mama's a hippie. At least that's what Daddy says when it comes to Sofie's next Favorite Thing: Cloth Diapers. Yes, that's right. But these aren't your grandmother's diapers. Or your mother's. Or even your older sister's. And by that I mean the diapers they used on their babies (not themselves) ;-0

Gone are the days of plastic pants, prefolds, safety pins, and *cringe* dunking the dirty diapers in the toilet to wash them out. *ugh* Nothing that goes into my toilet gets reused. Sorry, but the only non-natural cleaning product I use in my house is the Clorox Toilet Wand - one time use.

Prefolds are still available and a fall-back item for many, but they're superior to their past counterparts in absorbency. And they're usually secured with something called a "snappi" (see below), instead of a safety pin. Much faster, much safer. (And, incidentally, invented by a Daddy.)

Cloth diapering can be extremely economical this way and also much better for our environment than filling the landfill with loads of diapers and...um...their contents. Plus the diapers you buy for your first baby will still be there to use on your second...and third...and ?? Imagine how many disposable diapers and wipes you'd be throwing away instead.

When I started cloth diapering, I got lots of negative feedback - all from people who do not use cloth diapers or know anything about the "new" way to cloth diaper. Their comments were well-meaning, because, let's face it, no one wants to play in poo stew and the old way of cloth diapering was pretty gross.

Kenny and I were both diapered in cloth as babies. Oh, what our moms did for our tiny, sweet little bums. ;-) That's the way it was then and lots of moms diapered that way. Then disposables came along as the popular choice and cloth got a bad rap. Since then, cloth diapers have evolved many times over to become (in my opinion) superior to disposables. I've yet to meet a mama who's cloth diapered within the last five years and doesn't think cloth is superior to disposables.

How is cloth superior, you ask? Well...

• We've already talked about how cloth is better for the environment and can be much more economical than disposables.


• Many cloth diapers are organic or made from natural, unbleached fibers - much better right up next to baby's sensitive skin than the chemicals found in disposables.


• They breathe! A lot of parents switch to cloth on the recommendation of their child's pediatrician to clear up diaper rash. Cloth diapering parents swear by cloth as the answer to diaper rash dilemmas. The new styles of cloth diapers are made with fabrics that pull moisture down into the diaper and away from baby's skin.


• They don't leak like disposables. Cloth diapers of the past may have been prone to leaks, but today's cloth diapers are extremely absorbent and quite leak-proof. I've talked to several moms who switched to cloth because they were tired of laundering blowout casualties every other day or wet sheets in the mornings after their lil' pumpkin's disposable diaper leaked. From personal experience, Sofie is a heavy nighttime wetter (sorry baby, you are). I cleaned up pee sheets several times in disposables but only once with cloth and that's because I didn't put her in an appropriate diaper for all night wear.


• Cushier landing spot when babies are learning to stand up or walk.


• They don't smell as bad as the disposable diaper pail. They get washed every few days instead of stewing for a week like disposables. The part of the diaper that's next to baby's skin allows the poo to just roll right off into the toilet - no touching, no scrubbing, etc. Then you just toss the diaper into the pail until wash day, instead of leaving everything sitting in the diaper pail for days. Icky. Don't want to get up close and personal with poo? Hey, let's face it, if you're changing the diaper, you're already up close and personal. Welcome to parenthood. You'll be peed on, pooped on, and thrown up on more times than you can imagine as a parent. Once you have a little bambino of your own, you and your little one's bodily fluids will be well acquainted, regardless of what's on their bum. That's just the way it is.


• They're convenient. Sure you have to carry them all the way to the washer and then flip them over into the dryer every couple days or so, but at least you won't ever have to make a run to Target for diapers at an inopportune time, subsequently being overcome with Target hypnosis. This is what happens to you when you go to Target for diapers, but come out with new curtains, a bunch of new baby clothes, a cute purse, and new patio furniture, wondering where the last two hours went. Send your husband, men are immune to this phenomenon. Or...use cloth diapers!


• They're soooooo soft and comfy. This is probably the main reason why I chose to cloth diaper Sofie - comfort. If you were a baby, would you rather wear non-breathable, scratchy, paper pants all day or have your little bum swaddled in organic bamboo velour? sooooo soft.


• Oh, and one last thing. They're. So. Stinkin'. Cute. (no pun intended) You will be sucked in by their cuteness. It's unstoppable.

There are so many options for cloth diapering, it was really overwhelming at first. I jumped in and tried pretty much every type of diaper to see what I liked. Once I knew what worked for us, I built up the diaper stash with our favorites. These are the main players in Sofie's closet...

The basic, all-around, easy to use BumGenius

BumGenius diapers are an All-In-One (AIO) diaper with the cloth and the cover all together in one piece with velcro tabs to fasten. They go on and off just like disposables and are a staple in any cloth diaperer's stash. We have about 10 of these.

The oh-so-soft (and cute), Swaddlebees AIO

Love the Swaddlebees for their softness - can't you feel it?...

...and also for their trim fit and attractive design. They are mega-absorbent and look super comfy. We have a handful of these, looking to add more.

The deceptively practical Blueberry Minky Cover

Blueberry Minky covers are minky soft on the outside with a wipeable polyester on the inside and quick and easy velcro tab fasteners. You can choose a cute print and match it to a t-shirt and then keep the same cover on all day while you rock the t-shirt and cutie pants look. You can use the cover over an "old-fashioned" prefold, or I prefer to just use an insert or two.

No folding, plus the added advantage of having the layer of microfleece to pull moisture away from the skin. When you change the diaper you just unfasten the cover, pull out the wet insert, and place a new one inside. As long as the cover isn't soiled, you're good to go. This is my go-to diaper for when we are out and about. I can put an entire days worth of inserts in a Dipies n' Wipies pouch and be good to go. It doesn't take up any more space in the diaper bag than disposables. If you want to go the cloth route for economical reasons and keep the cute factor, this is the way to go. It's quick and easy. You can buy 4-6 really cute Blueberry Minky covers ($22 each) and a dozen or two inserts ($9 for a 3-pack) and you've just cloth diapered your child for $200. Try diapering your child in disposables for that amount of money.

Or maybe you just want to rock a cow print. Moo.

If you're really into the cute factor, it's time to step into the world of fitted diapers. There's a really wide variety of prints and fabrics to choose from. Fitted diapers are the cloth part of the diaper, without a cover. They have elastic legs and waist and usually fasten with snaps. They are one-size fits all from about 10 lbs until your baby is ready to potty train. They're super soft and very breathable.

You can add a cover if you're using this type of diaper under clothing to make sure no wetness seeps through, but high-quality fitted diapers are extremely absorbent. And with prints this adorable, why would you want to cover them up?

Around the house, and sometimes for short trips out and about, Sofie is usually wearing a shirt, a fitted diaper and leg warmers. She naps in them during the day and I don't have a problem with moisture coming through them, because they are so absorbent.

Beware, fitteds are where the addiction to cute can get dangerous.

Fitteds. The next level.

Which brings us to The Goodmama diapers. These fitteds are the crown jewel of cloth diapering. Highly sought-after, handmade, and produced in limited quantities, Goodmama diapers have become the hyena of the cloth diapering world. The baby fashion statement. There are hundreds of designs. I've seen some go for over $135 each. I draw my line much lower than that, but Goodmamas are worth every penny spent.

The luxurious Goodmama

The softest, most absorbent, uber-chic diapers out there.

A sampling of Sofie's diaper stash

The Top Drawer

A Fluffy Bottom Fashion Show

Make a Smilebox scrapbook

I love cloth diapering. It works for me, and I feel like I'm doing something good for Sofie and for the environment. Hopefully somebody learned something about it that they didn't know before, and some myths about cloth diapering have been dispelled. Like I said at the beginning of this post, Daddy thinks Mama's a hippie. So he still uses disposables on the weekends while I'm at work, and I use cloth during the week while I'm home with Sofie. Maybe someday he'll come around! Get on board, man. Cloth is posh! ;-)

Details

Thought I would fill everyone in on some details of Sofie's latest CDH recurrence. Sorry it's taken a while for me to post, but it's been pretty depressing going through all of this again, especially since this will be a bigger surgery than the previous repairs.

The central theme with all of Sofie's recurrences has been FEEDING TROUBLE. In fact, that's pretty much the only change we notice when she's had a recurrence. However, with her two previous recurrences she still had her NG in, and she had lots of vomiting after NG feeds, but never vomited after PO feeds. Since her NG has been gone for 3+ months and she's strictly PO feeding now, she has not thrown up once since her last recurrence in November.

She started having trouble with feedings around the beginning of March. She was taking smaller volumes, sometimes refusing the bottle, hot and cold with the bottle and solids. She also started teething around this same time. It's a very normal thing for babies not to eat as well when they're teething, so that's what we assumed was going on. Now I think this is probably when her recurrence happened, and her feeding problems were more related to her recurrence than to her teething. But when her teething would get better, her feedings would get better, so I was reassured by that fact.

I started to notice extremely subtle changes in her work of breathing and respiratory rate in the first part of March as well. When I say "changes in her work of breathing", I mean it appeared she might be working just a little harder to breathe, having to use more accessory muscles. I noticed this sometimes when she was sitting very still, and I could see her pulling a little more in her upper chest, around her clavicles. Her respiratory rate also climbed very slowly over the month from 40's to around 60. But I've heard of other CDH kids having to work a little harder to breathe with weather changes, specifically when it gets warmer outside. I checked her oxygen saturation very frequently, and it was always 95-97%, and her color was always good. She was happy, energetic, and didn't seem uncomfortable (other than her teeth/gums), so I decided to keep an eye on it.

After a full month or so of feeding difficulties and watching her work of breathing and respiratory rate slowly increase, I was becoming more and more concerned. I was actually thinking her left lung could be partially collapsed, causing the respiratory changes and maybe making her hiatal hernia worse, which could contribute to her feeding problems. This was what I had in the back of my mind, not another recurrence. She was still eating. Sometimes 5 oz. per feeding and never throwing up. She just looked good, and we thought we were somewhat out of the woods with reherniation since things were going so well. But you are never really out of the woods with CDH.

The feeding/teething issue was dragging on and on, and Sherry and Dana started to explore other reasons for her feeding problems as well. We were all concerned that something else might be going on.

The Wednesday after Easter, Sofie had a runny nose and seemed to be coming down with a cold. I was worried that if something was going on with her lungs, possibly that left one being collapsed, that she wouldn't have enough reserve to keep her sats up if she was coming down with a cold. So we headed to the ER at Children's for a chest xray.

On arrival (and after screaming because she's terrified of nurses and doctors), her sat was 88% on room air. We put oxygen on and she quickly came up to 100%. Her nurses deep suctioned her nose and throat to clear out some of the mucous so she could breathe easier, and they remarked that the secretions looked like RSV. Yikes, that was not fun to hear. So they sent a sample off to the lab to test her for RSV and Influenza A & B.

After the suctioning event, we went for a chest xray. Shortly after we were back in the ER, the doctor came in to say he had bad news. I said, "she's positive for RSV, isn't she?" He told us the results weren't back yet, but the xray showed another recurrence of her CDH. It was like the wind had been knocked out of us. Not again. And we knew this time would be a bigger deal than before. My next thought was...major repair + RSV? Bad, bad news.

We'd be looking at dealing with RSV first - with compromised lungs. Then a major repair surgery after 6 weeks of recovery from RSV, during which she may be NPO and need TPN and lipids through a central line. What a nightmare with all the feeding progress we've made. And she's old enough to be really scared of all of this now. And she remembers. I felt very defeated.

So 6 hours after arriving in the ER, we were finally admitted to our room - on the burn unit. Great news! Burn unit + infection = BAD. So we love being on the burn unit because there are no sick kids. Which meant Sofie wasn't sick. RSV and Influenza all came back negative. Thanks be to God!! One really major hurdle had been avoided.

The next day (Thursday) she had her CT to confirm the recurrence. They said it was another total recurrence, with the diaphragm pulled away from the posterolateral margin, just like last time. Dr. V. (surgeon) said her CT from this time looked almost identical to the one from November, except she's bigger now. She would need surgery and Dr. S.P. was trying really hard to fit her in A.S.A.P.

After the surgical group discussed her case, it was decided that since all other attempts at repair have been made and they've all failed, it's time to move on to another means of repair. The RLD flap repair is a major repair surgery. The latissimus dorsi muscle is a huge muscle in the trunk. They will dissect out part of the muscle, probably around the 4th or 5th rib and lay it down to create a flap that functions like a new diaphragm. They will thread this flap through her ribs - around the 9th-10th rib and suture it to whatever existing tissue she has that will work.




It will be a long surgery. She had has 3 other major repairs done, so there is a lot of scar tissue. There are transthoracic sutures from her last repair, alloderm patch, SIS patch, surgical glue, etc. In other words, she is a mess in there. There is a higher risk of bleeding and a higher risk of damaging her other organs because of this.

Since the surgery will be longer, that means she'll be on the vent longer. The longer you are on the vent, the longer it takes to come off typically. Once they start decreasing her sedation to try to get her to breathe on her own to come off the vent, she will have a lot of pain trying to use that muscle to breathe. So she'll be back on narcotics for quite a while, and she'll tend to breathe shallow to avoid pain. These things mean a longer recovery.

Once she can come off the vent and breathe on her own, she'll have to start very slowly with feedings again. We just have to wait and see how this will affect her reflux and her feedings.

This surgery has only been done 3 or 4 times by all of the surgeons combined at Children's. The surgeon who has done it 2 or 3 times will be doing Sofie's surgery, and he happens to be the one her did her 2nd repair. One of the other surgeons there has done it once.

I thought about relocating and having it done somewhere like CHOP. However, I know of A LOT of CDH kids and, besides Wyatt - who will be having this same surgery done in June - I don't know any other CDH kids that have had this type of repair done. It's pretty unusual to reherniate more than once, even more so to reherniate more than twice. So most kids don't make it to this point with repairs. Therefore, you'd be hard pressed to find an "expert" at doing it.

The good news is that with all of the ones done at Children's, none of them have reherniated after their RLD flap repair. According to the studies I've read, it does have a high success rate with very little incidence of adverse outcomes like decreased range of motion or strength on the affected side. This is supposed to be the definitive fix.

So why don't they just do this type of repair from the beginning? It is such a major repair, that most CDH babies wouldn't survive it in their fragile state. Once they are older, bigger, much more stable, it is a safer option. So you can see that we are very nervous for this surgery. Much more so than with the other two recurrences.

We came home from the hospital last Friday, with Sofie on 1/2 L oxygen by nasal cannula. So the oxygen set up is back in full effect at our house. Ugh, I'm so glad it's only for a week!! She still had a runny nose, but no other symptoms. Then over the weekend, she developed a cough. I was worried that by the time she was headed into surgery she might be working on a nasty chest cold, or worse.

She was already scheduled to get her last round of RSV shots on Monday in Dr. Y.'s office. Usually we just see the nurse for her quick shots and then we're out the door, but I asked if Dr. Y. or his partner were available. I wanted to fill them in on her upcoming surgery and also ask for a round of antibiotics to help get her optimized for surgery. A long shot, I know. From what I've heard from other parents, your kid has to be seriously sick these days to score antibiotics. And she wasn't actually sick - I mean no fever, just a head cold. And who gets antibiotics for that? Sofie does.

Dr. Y saw us within 5 minutes of walking in the door. We talked about the whole situation and he examined her really thoroughly. Despite her cough, the cold was still all upper respiratory. Good news, but I still asked for antibiotics. Dr. Y. said he was actually going to suggest some prophylactic antibiotics to protect her, since she's getting ready for this surgery. It's great to be on the same page with your doctor!! So she started them on Monday. By the time she goes into surgery, she'll be on day 5 of her antibiotics, which makes me feel more optimistic about her post-op respiratory status.

This week we've just been laying low and getting ready for this next surgery. I'm expecting a 2-3 week hospital stay, hopefully shorter. I'm getting the house cleaned, laundry caught up, bills paid. It's like we're going on a vacation, only the "not fun" kind.

My birthday yesterday was definitely not one of the more fun ones, but better than being in the NICU last year. Thanks for all the wonderful birthday wishes! Sofie's last surgery was done on Kenny's birthday, so we are getting a little leary of birthdays here. I'm just so glad we weren't in the hospital for Sofie's birthday. And I'm really hoping not to spend my 2nd Mother's Day in the hospital too.

I also want to say that we were deeply saddened to read of Kaden's passing yesterday. He fought such a hard 17 day battle with his Mommy and Daddy by his side the whole way. Craig and Kristi, you and your family are in our prayers this week.

There have been so many new angels recently who have not survived this horrible defect. It just sickens me to hear of another precious baby losing the battle. Carter's mom, Kellie, is taking some action in the wake of the most recent CDH storm. Please check out their blog for details. I am getting involved and supporting Kellie's efforts, so there will be more details to come here as well.

Happy Birthday Jennifer

Today is Jennifer's Birthday. Sofie and me wanted to let everyone know say they could send her big birthday wishes. We are seriously considering outlawing birthdays in this household though. This is the scene from Jennifer's last birthday.



On my birthday this year Sofie had her second reherniation repair surgery. And we just missed having her third repair surgery on Jennifer's birthday this week. So as you can see we are getting a little superstitious about birthdays around here.


While I won't reveal her true age I will tell everyone this. You know how they say 7 dog years is equivalent to one human year. Well I really think someone should do a study to find the equivalent of years aged by CDH parents during the course of a normal human year. Because I think we both might be approaching 50 years old.


Sofie and I just want to wish you a very happy birthday cakes. Hope you have a great day. We both love you so much and we don't know what we would do without you.


Kenny

No Surgery Today

The surgeons came in this morning and let Jennifer and I know that they had so many emergency cases come in over night that it didn't look like they were going to be able to fit Sofie onto the schedule today. Since this wasn't a scheduled surgery and she is not in distress and has probably had this for a while she isn't at the top of the list so if something more urgent comes through the door we get bumped. So unless there they change direction on us again (which if you have ever had to deal with surgeons is entirely possible) it looks like they are going to let Sofie go home today and we will come back next week whenever they can get a definite slot for us. I am sure Jennifer will have more updates when she gets them. Thanks to everyone for their prayers and thoughts. With any luck this will be the last time Sofie has to go through this ever again.

Kenny

Videos From Today

Here are some videos from today. I have a cute picture to post, but for some reason can't post pictures right now.  

Earlier today - Sofie needed lots of hugs.

Feeling better, watching TV with Daddy.

Time out to smile for Mommy.  Notice how she is completely in a TV trance, and then "snaps" out of it to look at me.  Don't bother me Mommy!!

We'll post again tomorrow as soon as we have any updates.  Thank you so much for your support!  It really helps keep us going during times like these.  I'm always so amazed by the support we get not only from friends and family, but also from the rest of the CDH community.  Even though we have never met most of you, we feel very connected to you through this experience and consider you part of our extended family.  Thank you all so much!

Surgery Time

The surgeons here all discussed Sofie's case to come to the best decision about what to do for her.  Dr. O. has agreed to do the surgery, and there's a good possibility they could fit her in to do it tomorrow at 2:00 pm.

For now, they are going to let her try to eat and see how well she does and if she can keep her sats up during and after the feeding.  Then they may try to wean her oxygen a little as well.  She'll be able to eat/drink until 6:00 am tomorrow morning, then she'll be NPO for surgery.  

She just had her first bottle and took 2 oz. just fine and kept her O2 sat at 100% on 1 L by nasal cannula.  Great job keeping her sat up!  She didn't seem to be working any harder to breathe during the feeding either.

We're very nervous for this big complicated surgery, but also anxious to get it over with and get on the road to recovery.  Please say lots of prayers for Sofie tonight and especially tomorrow during surgery.  We know how much it helps!  

Please also pray for Kaden and Ruby who are fighting their CDH battles very hard!  And for Jaime who was born early this morning and is just beginning his battle.  Happy Birthday, Jaime!!!

A Different Repair

Sofie did well with her CT with just some sedation from anesthesia.  She was out of recovery by 4:30 and back in her room.  The CT showed a complete reherniation.  The surgeon we talked with, Dr. V., said today's CT looked almost identical to the CT she had back in November before that repair, so it looks like it's completely pulled away at the posterolateral margin again.  

Since this is another big recurrence and they have tried to repair her three times before with patches and one primary closure, they are going to move on to a different, more complicated technique this time in the hopes that this one will stick.  The last time she had surgery we talked with Dr. S.P. about this possibility, but he was able to avoid doing it last time.  We discussed the fact that if she had another recurrence, they would most likely go ahead with a latissimus dorsi flap repair.  So that's where we are now.

The LD flap repair is pretty complicated and only a couple of the surgeons here have ever done it before.  One of them, Dr. O., is here tomorrow and there's a possibility that he might do it.  

Her recovery will be longer than with her last two surgeries.  She'll probably have quite a bit more post-op pain, which will make it painful to breathe on her own.  That, coupled with the need for more sedation and pain meds, plus the fact that it's a longer surgery and she'll be under general anesthesia for longer than before, means she'll probably need to be on the ventilator for a longer period of time while she recovers.  They are very tentatively saying she'll be here at least a week or two for recovery, depending on how long it takes her to breathe on her own, get off pain meds, and start eating again.  

Dr. V. took out Sofie's NG tube when she came in to talk to us.  The CT showed it wasn't where it needed to be anyway, so there was no reason to leave it in.  It was making her miserable and she's feeling so much better now that it's out.  She's been playing and smiling some, especially for her Grandmas and Grandpas.

The "Plan"

Here's the plan so far...

Sofie is getting contrast through her NG right now.  She'll get a 2nd round of NG contrast at 1:00, then go down for a CT at 3:00.  They will give her IV contrast down there, since the IV contrast moves through extremely rapidly.  I think they only have about a minute after they give it to get started.  The CT should be all done and results ready for Dr. S.P. by 4:00 pm.

Dr. S.P. is working at the South hospital today and after tomorrow is going to be out of town for a week.  But when they told him we were here, he took over her care from his partner who was on call here.  He wants to do her surgery either tonight or tomorrow before he leaves if he can get a time slot in the OR, even though he's not the one on call.  What a great Dr!  

It will be up to anesthesia to grant us a time slot in the OR.  We REALLY hope this happens and it all works out or else Dr. S.P. will be gone for a week and we'll have to come up with a new plan. 

Sofie's still doing fine.  She's very stable, just really uncomfortable with her NG in.  It's a really large NG that's used for suctioning the gut, so it's about as big around as her nostril and it gags her a lot.  She's been sleeping a lot today, since she was really worn out from all the happened to her yesterday and last night, but every time she wakes up she remembers what's happened and feels the NG and starts gagging.  It's so much harder on her to be here now that she's older.  She remembers everything and cries every time a staff member walks into the room, whether they touch her or not.  She's been a big snuggle bunny all day today, but she looks pretty sad.  :-(  

A 3rd Reherniation

To make a long story short because I'm not a very fast iPhone typest, Sofie is back in the hospital with what appears to be a 3rd reherniation. She's not in any immediate distress right now, but she will need surgery soon. We're hoping to wait until dr. S.P. is available to do it since it will likely be a much more complicated surgery this time. For now she's NPO with a big NG tube in to keep her stomach empty that's hooked up to low wall suction. She has an IV with maintenance fluids just to keep her hydrated and keep her blood sugar up, and oxygen by nasal cannula. She is feeling pretty miserable from all that's been done to her today, so Kenny and I are taking turns snuggling her all night. Other than for diaper changes she hasn't touched the bed in here yet. She has earned her all night snuggle time. The surgeons will round on her again in the morning so we can come up with a plan. We'll keep you posted.

Easter Pics

Make a Smilebox scrapbook

Sofie's Favorite Things I: The Ultimate Baby Book

I'm starting a fun little series of posts to show some of Sofie's (and Mommy's) favorite things, so she can look back and see some of the things she enjoyed.

The first of our "Favorite Things" is something I planned on doing from the time I started the blog, but it took me until November of last year to actually start doing it. I'm having her blog printed from beginning to end, including all the pictures and the comments that people post. I consider it "The Ultimate Baby Book."

Since Sofie's 1st year was so different from most babies, it was hard to find a baby book that wouldn't be half blank or filled with pictures that really didn't fit. So after a lot of searching, I found a company that will print Sofie's blog in a hardcover book for me, with next to no effort on my part (even better). It's called Blog2Print and it's really reasonably priced, which is great for us, since we have A LOT of printing to do!

I'm printing her books in 2-3 month increments, which makes them around 100 pages each. You can check out her first book here. I think they're great, because Sofie will have these books to look back at and see what she went through. She'll be able to read everyone's comments and see how many people were out there praying for her!

Sofia's CDH Story Volume I Jan-Mar 2008

Publish at Scribd or explore others:

Want your own blog book? Use this code when you make your own book and you'll receive 15% off. ;-) MyBlog31MAR04679