The rest of the day on Saturday

So literally just minutes after I posted the last blog on Saturday Hannah decided to once again develop a complication.  She developed a pneumothorax, that's a collapsed lung, on the left side after they removed her chest tube from there.  It was partially collapsed and the ICU doc tried a few things to see if it would resolve on it's own with less intervention but they ended up putting in a different chest tube around 11 pm Saturday night.  This one is inserted in between her ribs, which I understand is a little more painful than the one through her abdomen, so she is back to receiving IV pain meds, but at least she is comfortable with them.

The other nice thing is that they let her start taking fat free breast milk.  There is a donor milk bank here at PSL and they have some milk available that has had all the fat removed, she loves it.  She was not taking the Tolerex formula very well and was so unhappy ever time we tried to feed her so we switched her over and it's like night and day.  Last night was the first time she had some, she guzzled down 2 1/2 ounces, burped and passed out, it was wonderful!  The ICU doc was a little hesitant about the breast milk, but a few of the nurses really pushed for it and I'm so thankful they did.  I have no qualms about donor milk, it's pasteurized and the moms that donate it have been strictly screened, I'm so thankful they have donated so she can have a delicious meal again.  The calorie count is different with the fat removed, so right now they're trying to figure out how to fortify it to bring it back up to the level she needs.  The bank won't use my milk, I'm guessing it would "potentially contaminate" their machinery, but that's fine with me, that means I may actually have some stored up when all this is over with!

Overnight her RA lines (the IV lines that went directly into the right atrium) started to leak so they pulled those out this morning.  Her only access is a peripheral IV in her left foot that we're guarding with our lives.  Her other various "connections" are her two chest tubes and her nasal cannula and her continuous pulse oximetry.  That count is way down from when she started almost two weeks ago.  So far her nurse Jenny holds the record for removing the most "stuff" from her, I gave her credit for the chest tube, JP drain, pacer wires and art line on Saturday.  She is pretty happy to hold the rank of leader.  See, it's not all stuffy seriousness around here.

Saturday night I had a mini break down but yesterday was better.  Christa came down and spent some time with me in the morning, I am so thankful for her, she is the best friend a girl could have.  Jeremiah and I had lunch in the hospital cafeteria, the food was good for a Sunday and then my mom and I took Abby to the Disney Store to pick out a princess dress to wear for their upcoming trip to Disney World.  Jeremiah and I went out to grab dinner at a pizzeria close to the hospital.  I didn't spend very much time here yesterday, but I really think I needed that escape.  I have been staying by her bedside day and night for almost her whole adventure here and I was starting to go a little crazy.  I'm even trying to figure out which night I can go spend at home this week.  I don't want to leave her, but she's fairly stable and the nurses take such wonderful care of her that I feel like one night away should be okay.

More pics:

Mmm, fat free breast milk with concentrated Tolerex, yum, yum.

All wrapped up and sleepy after her bottle.

Weathering the storm

Weathered a rough night last night.  Hannah Joy didn't want to sleep, she didn't want to eat, she didn't want to watch her mobile or suck on a pacifier or do anything else but cry.  It was hard to watch and harder to experience.  Neither one of us got much sleep past midnight.  I couldn't put my finger on the source of her distress.  Is she constipated from the iron supplements she gets?  Does she want to eat something that tastes better than the Tolerex formula she has to eat (it smells a lot like glue by the way).  Are her chest tubes/JP drain/femoral art line/sternum bothering her?  Does she just want to be held?  I think what it came down to was that she was having some withdrawal from the stronger pain meds she had been receiving.  Bummer.

All I wanted was to pick her up and rock her and kiss her and sway and shush and hug.  Sometimes you can feel so helpless in the PICU.

It's worse at night.

Then the sun came up.  And the morning shift came on, one of my favorite nurses is back with her today.  I got a shower, some coffee from the Ronald McDonald family room and the docs came in to round.  They decided it was time to pull out some stuff.  I'm thrilled!  This morning she lost one chest tube, the JP drain, the pacer wires and the arterial line in her groin.  I watched.  It was fascinating.  She received some pain meds before hand so she basically slept through the whole thing.  I bet she's exhausted, she's still sleeping.

So now my adorable little four month old (today is her four month birthday) only has a whiff of oxygen by nasal cannula, one chest tube (it was putting out too much drainage to pull out and it still has to drain the chylos, that's the fatty stuff) and her central lines called the RAs that are running thru the skin of her chest directly into the right atrium of her heart, they're like fancy IVs.

I'm in a good mood right now.  I could be delirious from the lack of sleep.  Hannah is sleeping comfortably for the first time in about thirty six hours.  I worry a little when this much good stuff happens at once because I know there are more lows coming, stuff will happen that will be another setback but I guess for now I can rest in this little victory.  Only time will tell, and there are a lot of hours left in the day.

Oh, and the Cornhuskers won yesterday.  Go Big Red!

Much to be thankful for

So I've written and rewritten this post in my head several times over about the last thirty hours.  Early yesterday morning I was planning on writing a post titled "My three month old newborn" talking about how Hannah was starting to drink breastmilk from a bottle but ate every two hours overnight and how hard it was to change her diaper with all the lines and wires and how I felt like a new parent again.  Then in the early afternoon yesterday I was preparing to write a blog called "Bumps in the road."  That blog was going to be all about how hard it was to struggle with the set backs she experienced yesterday and how I'm just about done emotionally with all this stuff.  But I didn't want to write a blog ranting and complaining about our hardships this close to Thanksgiving.

So I put it off.  (You're surprised, I know.  Me, stalling.)  And I got some sleep, and I prayed a lot and this morning I took another therapeutic shower and now I'm ready to face the day again.

Yesterday morning Hannah's nurse noticed that one of her chest tubes had cloudy drainage in it.  The cloudiness is caused by chyle (lymphatic fluids) leaking into her pleural cavity.  In english, that means she has fat, namely triglycerides, leaking into her chest cavity.  This happens sometimes after cardiac surgery and the longer you're on the bypass pump the greater your chances.  Hannah was on the pump for a total of 218 minutes, thats a long enough time.  This is a bummer of a setback for us.

To treat chylothorax we had to stop feeding Hannah breastmilk and switch her to a fat free formula.  The time that she has to stay on this formula varies depending on how fast the chylothorax resolves.  She is getting lipids through her central lines since she can't take in any fats orally.  I'm bummed because I thought we were getting closer to breastfeeding again and getting the drains out.  At least one of the chest tubes has to stay in until she stops leaking chyle, could be a few days, could be longer.  She has to stay on the formula that whole time too.  I'm hoping and praying that it resolves quickly and we can move forward.

She doesn't love the formula too much so the nurse put in an NG (naso gastric) feeding tube that goes up her nose, down the back of her throat and into her stomach.  We try to get her to drink at least two ounces every four hours, if she doesn't finish her bottle she gets the rest poured into her feeding tube.  She's sleeping better this morning and was almost in a good mood when the docs were in here doing bed rounds this am.

I'm so thankful for all the nurses and docs are doing for her, and I'm so thankful for all the well wishes and prayers everyone is sending our way.  This is a bump in the road, sure, but when this all resolves and we walk out of here, whenever that is, we won't be coming back.  There are kids in here who will endure years of heart surgery and all the complications that follow it; for Hannah, this is a one time thing.

I got to hold Hannah yesterday for the first time in a week.  The nurse went through a lot of trouble to swaddle her and protect all her lines so that I could hold my baby for a few minutes.  It was wonderful.  I look forward to picking her up like it's no big deal again, I will never take holding my children for granted again.  Also, she is weaning off her oxygen pretty well, hopefully it will be gone by the end of the day.

Please pray that Hannah's chylothorax resolves quickly, I'm not trying to be competitive or anything, but I would love for her to be the fastest resolving case of this that her doctors have ever seen.  In the twenty five years that Dr. L the surgeon has been repairing VSDs he has never seen one in the spot where her second VSD was, so I would like to wow him again.  Also pray that Jeremiah and I's spirits and attitudes  can endure this, there are moments where I feel like we will be raising Hannah in this room.  And this may sound selfish, but pray that my milk supply stays up and I can breastfeed Hannah again someday soon.  She is my last baby and I had really hoped to feed her as long as I can.  I love feeding Hannah, it's our quiet time, something special she and I share, and although bottle feeding can be special too, there's something extra special about being her source of food.

Happy Thanksgiving everyone!

Love, Jill, Jeremiah and Hannah Joy.

Little froggy cry

We have had a pretty good day today.  Hannah had her breathing tube removed late in the morning and has been on a roll since then.  She is receiving less pain medicine than before, so she is a little crabby.  I think her throat is probably a little sore, she's probably hurting from her chest, her right foot hurts from that IV, she's tired of lying in bed, she doesn't like having 5 liters of oxygen forced up her nose and I think she's overly tired.  Still, it's so great to see her little face without her breathing tube.

Really, this whole part will be over soon.

She has been fussy this afternoon, she has a little hoarse, froggy throated cry.  It was really weak at first, we could barely hear her at all, it's getting a little stronger this evening.  She is currently lying in her crib, loosely swaddled staring up at the mobile above her head.  She received some pin meds a little while ago so I'm wondering if the lights are kind of "trippy."  Every so often she lets out a little froggy cry, like, "oh, I'm over this and I'm not so happy."  Then she's quiet.

We aren't able to hold her yet, we're still waiting for the RA lines and chest tubes to come out.  The nurse let me cuddle her in her crib today, I couldn't really pick her up, but I was able to put an arm under her head and snuggle up close to her.  She has been intubated for five days, but her tiny little baby breath was the best smelling thing in the world!

Over the next few days she will hopefully start eating again, first from a bottle then hopefully back to breastfeeding.  We're hoping her kidneys start taking over their usual function soon, she has been leaking a lot of fluids from JP drain in her abdomen, she needs to be peeing them out instead.

Her surgeon came in after her tube was out just to see how she looked.  He was quite pleased to see her little face, as were we.  He is going out of town for Thanksgiving.  I hope we are gone by the time he gets back, but we'll just have to see.

Much love to all.

This one has pictures!

So I have a few pictures for those who want to see them at the end of this blog entry.  Some people may be shocked or bothered seeing Hannah and all her "stuff."  Remember that she is neither sick nor dying and that all this stuff is there to help her.  It will start coming off soon and all be a distant memory.  If you don't want to see them then don't scroll down to the bottom.

Hannah has had the typical ups and downs the last few days and nights.  She'll do really well for a few hours, then face a little set back, then after a few hours of that she is back on the right track.  I was a little overly optimistic with my last post, she is still intubated, but they are weaning her down off the ventilator and she is initiating most of those breaths on her own.  Hopefully the breathing tube can come out tomorrow evening or Monday morning.  She has been weaned off a sedation med and one of her blood pressure meds, but has picked up an antibiotic in the mean time.  Her temp goes up, it comes down, it goes up, comes down, so on and so forth.  They unhooked her pacer wires (like an external pace maker) two days ago.  She lost a peripheral IV yesterday morning but they haven't had to put another one in.

The nurses here continue to take excellent care of Hannah and us.  Today Hannah and her nurse made a hand turkey, it's very cute.  She has a kimono and a hat made by volunteers and some socks that are WAY to big, she's picking up swag all over the place.  Everyone who comes into her room remarks how cute she is, I can't wait for her to wake up and start flashing her smile, then she'll really knock their socks off!

This evening she woke up and was as coherent as she has been since the surgery.  She turned towards Jeremiah and I and focused her eyes a little and even tried to smile at us.  Then she fell asleep, that must have been exhausting.  It was exciting for us, I'm so eager for her to start progressing and smiling at us again.

My new favorite thing?  Hannah sucks on her breathing tube like it was a pacifier.  Sometimes when she really gets going you can hear it all over the room!

I have been singing a song in my head on and off for about a week now.  It's "Rise" by Shawn McDonald.  We had a little bit of a rough night last night so this morning I stood in the hot shower for awhile and sang out loud until I felt strong enough to take on another day in the PICU.

     Yes I will rise

Out of these ashes, rise
From this trouble I have found
And this rubble on the ground
      I will rise


Cause He who is in me
Is greater than I will ever be
    And I will rise...  




Ready for some pictures now?

We'll start out slow.

Here is her little hand turkey! Isn't it so cute!

So she is sleeping comfortably, she mostly sleeps all day at this point.  She has her breathing tube in, her nifty headband is actually sensors that tell us how well her brain is being perfused with blood, and you can see most of her incision with the steristrips on it.  It's a little pink, that's why she's receiving antibiotics in case that's the start of an infection.

Hannah is the little lump of blankets in the middle of the bed.  We've already gotten rid of two IV pumps!

 And finally:

Me and my baby girl, she is just the cutest kid that has ever stayed in this PICU!  

The roller coaster ride

We are beginning to understand the ways of the PICU.  It is a roller coaster ride of emotions and patient status and well being.  It is two steps forward and one step back, which is to be expected.  Thankfully it is not one step forward and two steps back.  It is beeping alarms and eight IV pumps going at the same time.  It is bedside change of shift report that lasts for a half hour on one kid (mine) and 7am rounds with the cardiologist, the surgeon and the intensivist.  Currently it is a way of life and consumes me entirely.

I have said it before, but I look forward to the day when this blog goes back to being about everyday nothings.

I will start at the beginning.  Hannah had her surgery on Wednesday morning.  The surgeon closed the VSD and took her off bypass, then they did an ECHO and discovered another VSD that was tucked up way underneath the tricuspid valve.  So back on bypass (thankfully they do the ECHO before finishing the close) and they fixed the second VSD.  The surgeon also placed a stitch in the ASD.  They ended up having to leave her chest open overnight because she didn't tolerate closing it all the way.  She had some slight swelling and irritation of her heart and started to have low blood pressures, hence the big hole she came to the PICU with.  The surgeon had placed a patch over the hole and we couldn't exactly see her heart beating through it, but we could see the patch moving because of the vibrations of her heart.  This was fascinating to me.  From the moment I handed her over to the nurse at the OR doors I have felt peace.  It is surely only due to the prayers of all my friends and family and complete strangers!

I spent the night in the PICU last night, I will again tonight.  I did not get too much sleep last night.  Hannah was struggling with low blood pressures and an occasional irregular heartbeat and a few other things.  Needless to say her nurse earned her paycheck last night.  Hannah was a 1:1 and her nurse rarely left her side.  There were a few times when Hannah was acting up that most of the night staff were in her room.  These women are wonderful, I cannot say that enough.  Watching it from a nurse's perspective I have to say they worked so well as a team, so supportive of one another and working so hard to give my little peanut girl the best care.  From a mother's perspective I saw angels, caring for my baby.

This morning the cardiovascular surgeon and the cardiologist came in and decided it was time to close the hole.  They brought the OR team with them and closed it right here in her room.  I would have loved to put on some scrubs and watch, but probably only if it wasn't MY baby.  I'm experiencing something I hadn't planned on: I'm fascinated by all the medical stuff going on around me.  It kinda makes me wish I was a PICU nurse!

The rest of the day had been on and off exciting.  She ended up needing some pace maker type help for about an hour late in the morning, but the surgeon and cardiologist assured us she is not doing anything they wouldn't expect her to do.

Tomorrow hopefully we start to loose some of the "stuff" attached to her.  The vent and the blood pressure meds will be the first to go, I'm excited about that.

Will keep you posted...

Almost there...

Had the trial run down to PSL this morning.  We found the parking garage we DO NOT want to park in on Wednesday.  The Rocky Mountain Hospital for Children at PSL (that's their official name or something like that!) is heavy on the waiting rooms, and thankfully, bathrooms.  I love children's hospitals.  When I was in nursing school I was a clinical aide at The Childrens Hospital here in Denver, I loved that place, it's true that children are not just small people.

We met Dr. L, the surgeon, everything I had heard about him having a great bedside manner and being really friendly and knowledgable was true.  He explained at length all about the anatomy of her VSD and the repair and her recovery, it was wonderful.  Having all the info makes me nervous and then a little less nervous because I'm a planner and I like to know what's coming.  She had her ECHO, EKG and a bunch of lab work and Jeremiah and I took a tour of the hospital while she was having all that done.  Jeremiah and my Mom even donated a pint of blood each for the baby if she needs it during surgery.  They said it wasn't all that bad, maybe I will even be able to convince them to do it again sometime.

I feel really at peace about her surgery right now.  I'm sure I'll freak out later, and then be fine again and then freak out again and back and forth several times before Wednesday morning.  I keep placing my hand on her little chest, so smooth and perfect, I can feel her heart beating inside.  I don't want her to have a wound there, a scar to remind us of all this, but she will, and I'm sure that with time it will fade, just as some of the emotions surrounding all this will fade.  She will never remember her surgery, I'm thankful for that.

I have a list of things to do to occupy the time between now and Wednesday morning.  Laundry, packing, getting the house in order for me to be gone for awhile, spending time with Abby and Eli and Jeremiah.  On the agenda for tonight?  Dinner date with my husband to Ikea to look at new drinking glasses, ah the joys of an everyday life, I savor them!  Thanks Mom for watching the kids so Jer and I can spend a little time alone together.

Until next time...

Some of my thoughts...

Well Hannah's surgery is scheduled for next Wednesday the 16th.  I am eager to get it over with.  We have some pre-op stuff on Monday morning, blood work and a sedated echocardiogram (ECHO) to get a very detailed look at her heart.  I'm hoping they explain a little more about the surgery and her recovery at that appointment because I'm not sure what is really going down on Wednesday.

There are a lot of things going through my mind right now.  I am experiencing a little tunnel vision, like I'm stuck in this heart surgery black hole or something.  I'm sure there is stuff going on with Abby and Eli that I'm missing out on and my household is beginning to suffer a little bit, the place is a mess and I was late on a few bills; I will be so glad when this is all behind us.

I'm trying to prepare myself for what will happen in the hours and days after Hannah's surgery.  I can't decide if it's better to be a nurse or not.  I honestly don't remember a lot of cardiac stuff, I was not very good with the cardiovascular system and all the medications and I certainly don't know how you perform the surgery that Hannah will have.  All I know is I'm going to hand them my little baby who looks perfectly healthy and when she comes back to me she will look sick.  I'm trying to mentally prep myself for that, and I'm packing a big box of kleenex too.

I also feel like I need to explain something.  Hannah's heart defects, the PDA, ASD and VSD are some of the most common congenital heart defects.  I'm not sure about the statistics, I haven't done to much research online, I'm not sure why that is, but the cardiologist told us that this is one of the easier surgeries the surgeons perform.  When compared to some of the other heart defects out there this is a piece of cake.  Still, she's my little baby and I've never been through something like this, so to me it's still a big deal.

I've been following another blog on and off for sometime now.  If you're in the mood for a good story and a good cry go over to BowensHeart.com.  This is the blog by Matt and Sarah Hammitt, Bowen's parents.  Matt is the lead singer for the Christian band Sanctus Real and they started the blog after they discovered that their unborn son had hypoplastic left heart syndrome.  Bowen recently celebrated his first birthday and he is a little miracle.  I've been reading about him since before I was ever pregnant with Hannah but it took on a different meaning after we had her.  It has been both terrifying and comforting to read it.  If you're at all nervous about Hannah's surgery you may want to wait until after she is stable and recovering, but I would recommend it to everyone.

I will continue to blog with updates from time to time.  I look forward to the time when this blog goes back to ranting about raising children and sharing my random and funny thoughts on life.  Hannah says hi.

Waiting for the phone to ring

November is here.  I have a feeling this month is going to go by in a speedy blur.  I'm still in the midst of that postpartum fog, the one that lasts for the first year or so due to lack of sleep and hormones and other factors. 

Today was the day when Hannah's cardiologist, the amazing Dr. C was going to meet with all the other docs and surgeons in their group to discuss all the potential and upcoming surgery cases.  They agreed that Hannah needs surgery to repair the holes in her heart, and now is the time to do it.  So now I'm just hanging out waiting for the surgeon's office to call me and schedule her surgery.  Dr. C was kind of funny on the phone, he must have all kinds of parents he has to break this sort of news too, and I'm sure everyone reacts differently.  He asked me how I felt about Hannah's surgery and I told him flat out, "I'm ready, bring it on."  I could almost hear him smile knowingly over the phone, "I know you're ready," he said.  

So now I'm just waiting for the phone to ring to schedule her surgery date.  The surgeon is out of town next week so it will hopefully be the week after that.  It's not like I have to work the timing around my other appointments, I'm pretty sure I can cancel my hair appointment.  But looking ahead at the calendar I'm guessing I will be sampling the fine dining experience that is Thanksgiving at Pres/St. Lukes.  Hospital turkey isn't all that bad, I think I've had more Turkey day dinners in the last ten years at the hospital I work at than I have at home.

I'm not sure what to expect.  I keep going back and forth from being excited that this is really going to happen soon to being really nervous that this is going to happen soon.  Thankfully the cumulative sleep loss of the last three months is helping me to be exhausted enough to sleep at night instead of lying in bed worried about surgery.  The stress is a little much, I've got a horrible head cold, the backs of my eyes hurt and I have a knot under my left shoulder blade that any good Boy Scout would be proud of.  But there is a light at the end of the tunnel, and I'm thankful for that.

Stay tuned...