Jinx

I didn't want to jinx our chances of having to go back on oxygen for Christmas so I postponed any updates until now.  We are officially off oxygen for eleven days and we are holding strong with saturation's ranging from 85 to 92 percent.  I wasn't sure we would make it to Christmas based on our past tests but this time Lucy was ready.  I can't begin to tell how awesome it is to have her 'free' for most of the day.  She technically is not tube free because we still have the NG tube, but her feedings are only a half hour long.  In total that adds up to four hours a day, two of which she is usually sleeping.  I really didn't think being on oxygen  at home was that bad, but know that I have a taste of the good life I don't want to go back.  Traveling is even better!  I took her two Jewel the night before Christmas Eve and I brought just her.  I even took her out of the car seat and let her sit in the front of the shopping cart.  I think she thoroughly enjoyed it too.

No cannula

Christmas Eve we spent at my parent's house and Christmas day was spent at my in-laws with a quick stop to see Great Grandma before heading home.  Mike and I were unsure how both trips would play out. especially since Lucy's stranger danger radar is in high gear.  But it must have been the presents or the attention because Lucy could not get enough.  She smiled through both days and didn't cry once even when she was held by someone other than Mike, myself or the grandparents.
We also found out that if she is really tired, she'll sleep anywhere.  During Christmas day festivities, she went down like a log on two fleece blankets and slept for two hours.  That kind of nap is almost unheard of in our house.  Maybe we need to rethink her bedding and crib situation.

Christmas baby

Friday we headed back to the hospital for a follow-up x-ray to make sure there was no effusion and being off oxygen did not have an impact.  We got word today the x-ray was clear.  Woo hoo!  This will mean that we can start discussing decreasing some of her medication at the next appointment.  We will also start talking about g-tube surgery again.  Since our potential move will be in January (both our loan and the buyers loan is still in underwriting) and Lucy's birthday is in February we may try to push surgery until March.  Three more months with the tube on her face.....ugh!  The only way it will happen sooner is if her cardiologist deems it necessary.

What Lucy will look like when she is eventually 'tube-free'

glad to be home

We had our follow-up appointment with cardiology on Friday and it was the best one yet.  Probably because we had no tests.  No x-ray, no EKG, no blood test, no echo.  Lucy cried only once when I laid her on the scale to get weighed.  She is almost fourteen pounds.  The remainder of the appointment she smiled and played.  I think it may have been the first time Dr. Husayni has seen Lucy happy.  He listened to her and said she sounds clear.  I asked about a couple of thing at the appointment.  The first was removing the 3 am feeding.  We will have an in home nutrition evaluation before we are able to make any changes.  We will endure a little less sleep for another month or so and hope it can be stopped in January.  The second was removal of medication.  Lucy is currently on seven medications, potassium and a vitamin.  I would love to get this down to two medications and her vitamin.  The first ones to go would be the diuretics and potassium.  However, since we have only been back on regular formula for a little over two weeks we will remain on the them until our next followup in a month.  Then possibly the reflux medications.  The throwing up has completely stopped, so we will keep the dosing the same and as she gains weight she will ween herself.  The last question was oxygen.  Can we remove it already?  Wait for it..........

   A week before Christmas we get to take Lucy off oxygen. 

Next Friday we will remove Lucy from oxygen.  I am excited and terrified all at once.   After a week off oxygen we will head back to the hospital for an x-ray to ensure there is no effusion.  This is huge.  Her saturation's have been in the nineties since the ballooning of her aorta and we have had her on only an eighth of liter.  Since the appointment I have moved her down to a sixteenth of a liter.  As long as her saturation's stay in the low eighties and above we are okay off oxygen.  I think it will be a good two months before we travel without our oxygen tank....but at least she doesn't have to be connected to it!

Then we can focus on removing that last tube from her face.  Unfortunately the G-tube surgery has been postponed due to our extended hospital stay and unexpected surgery.  We will start talking about surgery again at our next appointment in January.

In the last ten months I have asked for many prayer requests.  Sometimes I think more than in my previous thirty six years.  I know that the answer to my prayers is not always yes, sometimes it is no and sometimes it is not now.  I mean Lucy came after seven years of praying.  But yet again we see another prayer answered (and might I add quicker than I anticipated).  When Lucy came home from the hospital, the condo was perfect for us, but as the months have progressed, it seems to be shrinking by the day!  At the beginning of October we listed the condo, we had a couple showings and were preparing to remove the listing as we approached the holidays.  Then we got re-admitted and I swear everything falls by the wayside.  Well during that stay we received an offer and accepted.  Since then we have been feverishly looking at houses so that we will have a place to live.  Fifteen houses in one week and we found a house that we think will suit our needs for the future.  So once again, we ask for prayers that the entire process:  selling and buying, go as smoothly as possible.

And of course if anyone has any furniture they are getting rid of let us know.  If we are need, we will gladly take it off your hands.

Always Thankful

It's 9:06 pm on Thanksgiving Eve,  I should be at the movie theater with my sister.  Instead Mike and I are pulling out of the parking garage at the hospital after admitting our little girl once again.  This time due to low blood sugar.

We were discharged from our last admittance a day early on Tuesday (11/18/14).  The attending cardiologist was originally planning to send us home Monday, but a late blood test showed Lucy's potassium was low.  They were not comfortable sending her home so they planned to give her two doses overnight and retest in the morning.  The morning test came back higher and we were good to go home.  One dose of potassium was added to her daily regimen of medication.  The doctors did not change much else aside from dosage on some of Lucy's current medications.

Goofing around....with a diaper helmet

We settled into home life and looked forward to our therapy sessions the following week.  But first we had our followup appointment.  An x-ray to check for effusion and blood work to check her potassium levels were the main focus.  The blood test indicated low blood sugar.  Hers was forty eight.  Just to give you some perspective, the low end of the range they like to see is sixty.  Since this had nvever been an issue before Dr. Husayni ordered another test in two days to make sure this was a one time thing.  Tuesday morning we had our physical therapy session which went great.  We have a couple things to work on, the biggest being tummy time.  Tummy time is becoming increasingly harder now that Lucy has figured out how to roll over.  Oye!  Lucy's speech seession was just as successful.  Our therapist was a little worried that after our hospital stay Lucy would lose ground, but we picked up right where we left off.

Wednesday we went to Elmhurst hospital for Lucy's follow-up blood test.  We got home and I went to the grocery store to get some Thanksgiving food for Mike and I.  We had decided it was too risky to take Lucy to family Thanksgiving during flu season.  After a shower, I checked my phone and saw two missed calls from 708 area code (the hospital) and a voicemail.  Her blood sugar:  thirty six!  When I called Dr. Husayni back, one of the first things he said was 'You're going to hate me'.  I knew exactly what that meant.  We were headed back to the hospital.

I can tell that Lucy has changed me so much:  my outlook, my emotions, my reactions.  I have learned that I need to be strong so she can be weak.  I need to be a comfort so she can rest her head and cry.  I need to hold her hand while she is getting poked and prodded and make sure she knows it  will be okay.  And no matter what I feel, I need to take a breath and smile for Lucy.  She is also teaching me.  With each obstacle we face a chance to grow.  In the worst of days where she is pricked on the heal, in the arm and kept from sleep, she can bounce back a day later and give me some of this:

 To correct her blood sugar issue, we have moved back to regular formula on a complete bolus schedule.  That means no more continuous feeds overnight and we are getting up every three hours.  Somehow it feels like a regression, having to get up in the middle of the night, but I know this is a step forward.  Since the switch on Thursday, her blood sugar has stabilized.  Now we wait to see if the surgery was a success and that no chyle returns.  We have an x-ray scheduled for Sunday and if all looks good we are hopeful for a discharge within a day.

In the spirit of Thanksgiving

  We are thankful for a God who has his hands so tightly wrapped around our little blessing

  We are thankful for our prayer warriors

  We are thankful for each other, family and friends. 

This journey would be unbearable without all. 

Tube out

We do not get to go home.  We will start week three at the hospital on Monday.  It will be okay.

If I could compare being at the hospital to anything, I think it might be highschool.
Our first time was like Freshman year.  You're unsure of yourself, your surrounding and you are trying to learn everything.  You listen to the doctors and take their advice.  At this time, they know Lucy best.  It the longest year and our longest stay.

The second trip;  sophmore year.  You're familiar with the setting,  you know everyone.  There are less questions, but the things you are learning are a little more advanced.  You're skin is tougher and the doctors are relying on you a little more.  The year goes by a little quicker

The third trip;  junior year.  It's barely there.  It's a blip on the screen.  Three days, in and out.
You don't really learn anything...just biding time until senior year

But this trip...it's senior year.  King of the castle.  We now know Lucy best.  I ask things I wouldn't dare ask back in May.  As we moved down to floor two last Tuesday, I said we should probably just take out that left tube.  Doctors said no.  Wednesday morning x-ray showed the tube was nearly falling out and caused pneumothrorax (air in the chest cavity).  I told you so!  We flush her NG tube after feedings.  The nurses ask for our input when considering pain medication.  We are practically graduates.

By the time we are back for her third surgery, it's possible we'll have our masters degree.  Although if we don't have another admittance before then, we'd be okay with it.

Thursday morning we got another x-ray and bad news along with it.  She had reaccumulated fluid on her left side.  Seriously, where does this kid get all the fluid?  I spoke with the cardiolist and we had three options. 

1.  Insert another chest tube - um, no thank you!  It's hard enough to pick her up with one.
2.  Place her on NPO (it means nothing by mouth) and dry her out.  Can we say cranky baby?
3.  Increase diuretics and monitor carefully.  Least invasive, but probably takes the longest.

 

As much as I'd like to leave sooner than later, I was hoping number three was what they would decide.  In any option we weren't leaving this week but minimally invasive always has my vote.  Before they left I asked if they could at least take the IV out of her right hand.  She came out of surgery with IV in the right hand and left foot.  Since she is mobile and very curious they have to put plastic casing over it so she won't pull it out. It's pretty much a club hand and apparently a chew toy.  As we would catch her gnawing on it.  She was happy to have her hand back.  Makes it much easier to play.

After speaking to the surgeons, the team went with option number three.  With more fluid accumulating on the left side there was no chance they were going to pull the right tube out.  Even though it was draining minimally.  We have increased diuretics and the x-ray Friday morning is showing some improvement.  Cardiology came into speak with us after they reviewed the x-ray.  They would wait for no drainage from the right tube before pulling it.  Luckily for us that happened today.  We are officially tube free and possibly looking forward to mid-week discharge.

Sometimes you just have to goof around.  No heads were injured, just playing with band aids.

Tonight, while Lucy is in great hands, we will celebrate her and CHD research at the first annual Red Tie Ball.  It's a much needed night out to make sure we don't forget our first roles: husband and wife.

just a little tired

I'm tired.
I'm tired of commuting to the hospital.
I'm tired of never really knowing what the plan is.
I'm tired of getting into some sort of routine for Lucy only to have it disrupted by a hospital stay.
I'm tired of having to remember if this hour or that hour she gets meds.
I'm tired of having to carry a notebook every time we leave the house with all her medical info.
I'm tired of the strain on my relationships.
I'm tired of crying
But mostly I'm tired for Lucy.  For all that she has had to endure in these nine months. For all that is still to come.

These last two weeks have been trying and yet Lucy has managed to smile through most of it.  I'm amazed everyday at her spirit.  Happy 9 months little girl.

 

 

The catherization on Monday went well considering what they found.  The original plan was to balloon her pulmonary arteries, however, once they were able to view them, the doctor saw that there was no narrowing.  They were just small.  They instead ballooned the coarctation of aorta which was successful.  What we did not expect was the effusion around her lungs which turned out to be chyle and the dreaded chylothroax was back.  What was puzzling is Lucy showed no signs of distress especially after seeing how much drained in the first day (about 300 ML).  The doctor drained the chyle during the procedure and then inserted a pig-tail drain tube on the left side of her chest. He also told us that her left subclavian vein was blocked.  After the cath we met her back in her room in the PICU and it was insanity until we left.  Lucy was a complete mess.  We could not get her to calm down, even with morphine and Tylenol.  An x-ray was ordered and the doctor saw that the chest tube was coiled and sitting on her diaphragm.  Every time she took a breath she could feel it.  They ordered some IV sedation medication and planned to pull the chest tube out about 10 mm.  There are many things I thought I would be doing with Lucy but I can tell you helping a doctor and two nurses pull a chest tube out of her side was one that never even crossed my mind.  We were able to get her to calm down for periods of about 15 minutes on my chest, but that was not sustainable.  Our night nurse came in and took over.  She sent us home at 8:30 pm saying we were no good to Lucy without some sleep.  We found out the next morning she was given toradol around 10 pm and she was able to sleep through the night. 

Tuesday and Wednesday the tube drained more and Dr. Husayni said they would discuss her case in conference Wednesday night.  Then Thursday we found out they decided surgery.  The reason behind the decision was that the thoracic duct drains into the systemic circulation at the subclavian vein, which is blocked.  They felt ligating the thoracic duct could potentially fix the issue of reoccurring chylothorax.  Then the draining stopped and thus started the debate of if surgery was really necessary.
Through the weekend Lucy was a smiley, happy baby.  Our room was right in front of the hallway so she had plenty of people to watch.  Many people would stop and wave (the curse and blessing of glass doors) and Lucy would just smile.  And we just waited for a final decision.
That decision came Monday around 10 am and they expected to take her about noon.  Talk about short notice.  The first case took longer than expected and we ended up sending Lucy off with kisses around 2:30 pm.  Surgery was successful and we were back in her room by 6 pm.  This time we decided not to hold back on pain medication and had morphine and toradol scheduled.  She came out with a second chest tube, on the right side.  We moved down to floor two on Tuesday and were hoping for a discharge soon!  During rounds they said they would watch output overnight and pull both tubes Wednesday morning.  Unfortunately, there was still drainage overnight.  On the morning x-ray it showed the left tube had pretty much fallen out on it's own.  They had to pull it out and would monitor to see if any liquid accumulated.  We wait to see what Lucy's fate will be pending an x-ray.

Some much needed sleep amiss the craziness that is the ICU floor.

#$%!!#$%$#%$

This will be short because I feel completed defeated right now.  What was supposed to be an outpatient procedure with an overnight stay has turned into a two week hospital stay and a surgery.
During her catherization they found chyle accumulating in her chest cavity.  They drained this and placed a pig-tail chest tube to allow excess fluid to drain.  She has had a significant amount of drainage since Monday. 

I might have some of this incorrect as I am overwhelmed, but here is the gist:

The thoracic duct drains chyle into the left subclavian vein
Lucy's left subclavian vein is either non-existent or obstructed
Chyle would continue to leak into her chest cavity.

Dr. Husayni and the team discussed her case at conference and decided to treat this with surgery.  They will go in through the right side of her torso and ligate the duct at the base.  A leak can be very hard to find so they feel doing this at the base gives us the best chance at stopping it.
So we will stay at the hospital until Monday and recover the following week.

I want to scream 'This isn't fair!  Hasn't she been through enough?'  But this is life.  Sometime you are dealt a hand and all you can do is have faith that God's plan is far greater than you can even imagine.


Obviously we ask for prayer for a safe and successful surgery.  But we also ask for some peace and understanding as we deal with this unexpected news.

Cardiac Cath

We have held a lot of roles since Lucy arrived in February and on Friday we assumed a new role,  tooth fairy.  On Friday morning we noticed a tooth popping through her lower gum.  This along with the vaccination on Thursday afternoon made for a slightly crazy evening.  Sunday morning we noticed a second tooth coming through as well.

This past week was good.  Lucy has taken to sitting and can barely stand to sit in her bouncy chair.  It reclines too much (or so I think).  The best part of sitting is it has helped with throwing up.  After daily throw-ups for over three months, we have had four days free and clear.  We also saw the speech therapist and she impressed with how well Lucy was sitting.  We tried some puree foods and did very well.  We continue to try different types of foods to see if we can improve, but progress will be slow.  We are still working on tummy time as well to get her arms and neck stronger, but she has learned to roll over from tummy to back.  The only way we can get Lucy to stay on her stomach for any length of time is with the cat chasing the red pointer right in front of her.  She is mesmerized by the cat and will search for Mully any time she is awake.

Tomorrow morning we are headed back to the hospital for our forth admittance. This one at least was planned. We were able to schedule her cardiac catherization as the first case. The cardiologist (the same one that did her hybrid) will balloon her pulmonary arteries. They keep her overnight for observation as Lucy will be under anesthesia for the procedure. She should be discharged Tuesday morning if everything goes according to plan.  We will see what this means for her oxygen support.

We will update later this week, but ask for prayers for a successful procedure and a good night's rest for Mike and I.

Sitter, sitter

Who lives in a pineapple under the sea?    SPONGEBOB SQUAREPANTS.

Yes, I hear that phrase at least twice a day now. Usually I am singing this around six or seven in the morning. It is just catchy enough to stay with me throughout the day. I have yet to memorize the rest of the song, which is also slightly annoying because it's that one line, over and over and over.

I'm sure someone warned me during my pregnancy about how TV time would not longer be mine, but really the only advice I remember is get sleep.  The advice came in two forms.  The first was before she arrives sleep as much as you can.  Unfortunately, tingly hands kept me up most of the night in months five through eight.  The second was nap when she naps.  I fully intended to follow this, but when Lucy goes down for a nap I run around trying to get any and everything done I can while she is quiet.  I had not yet done this until last Sunday arrived.  Lucy woke up at six am and although we were not up late the night before, I was dead tired.  I put her in her bouncy chair and the aforementioned cartoon on the tube and laid on the couch.  But a number two through her onsie put a little damper in my relaxing morning.  I stripped Lucy down and grabbed the scale (we still have to weigh her to ensure she is gaining weight).  Lucy decided the scale would be a great place to pee.  After she finished, we got a diaper on, a onsie and settled on the couch.  To my surprise, I looked down and she was sound asleep.   I slowly got up and walked into the bedroom, set her in her crib and for once took some advice and laid down too.  It may have been the best hour and half nap I have gotten since last October.  We shall see if I follow that advice again.  I hope so!

We were hoping the echo would show some improvement in her pulmonary arteries.  The additional diuretics, however, did not help to open the pulmonary arteries so Lucy will definitely need a catherization.  This will be an overnight stay at the hospital, so the doctors can monitor her after she comes off anesthesia.  The catherization will balloon the narrowing pulmonary arteries to allow more blood flow to her lungs.  This should help her come off oxygen.  We are trying to schedule this within the next two weeks.  The catherization will delay getting the g-tube by about three weeks.  We will look to schedule the g-tube placement in early December.  Possible early Christmas present: a tube-free Lucy.  That would be amazing!

Our meeting with Early Intervention also went well.   Lucy qualified and will receive physical and speech therapy once a week. We have been working with her before our sessions start and already see amazing progress. She found her feet and is very curious. 









The biggest accomplishment so far is she is no longer a supported sitter!  Lucy is able to sit for about three minutes on her own.  She absolutely loves this new point of view.  Sometimes she will even sit up in her bouncy chair.

 

She has been making progress in her feeding too.  We have been practicing with puree foods and prunes seem to be her favorite.  As you can see below, most of the food does not make it into her mouth.  We are also slowing increasing volume while decreasing time.  Yesterday was the first day since July 15th that Lucy did not throw up!  We hope this too can become the new pattern.  

Sometimes she even helps with laundry, but she is not real good at folding.

moving pieces

Where to start, I didn't feel like we had a lot going on, but now all of a sudden it seems there are a lot of moving pieces. 

First, we had our monthly cardiology appointment at the beginning of October. 
When we got there Lucy was really congested and apparently to everyone at the hospital, a little blue.  I didn't really realize she was so blue.  But I guess it's like when you lose weight....the people that see you everyday don't notice a ten pound loss, but someone that hasn't seen you in a month notices immediately.  So we bumped her back up to a half liter through the appointment.  Lucy had usual echo and EKG.  I think so many would laugh if they could see the lengths we go to to keep Lucy quiet and happy through an echo.  My dad is holding a toy that plays music in one hand and a toy that lights up in the other as I am trying to keep the pacifier in her mouth, make sure her legs stay relatively still, all while batting her hands away from any cords she could grab.  Do that for forty five minutes and we're exhausted.  The results however were great.  Dr. Husayni is seeing increased function in her right chamber.  They did see some narrowing in the pulmonary arteries which along with some congestion explains the blue-ish hue she was sporting.  As for now, we started two more medications, both diuretics.  This is on top of the one she is currently on.  The reason for starting new ones is because the lasix can be hard on the liver, so they did not want to increase the dose.  The second one they started (diuril) works well with the lasix, but can deplete the body of potassium, so the third one (aldactone) helps to keep the potassium in the body.  We will follow-up in a week or so for some labs to make sure her potassium isn't too low.  If the new medication doesn't help, we will go in for a catherization, ugh, overnight hospital stay.  At that time they will decide if they can balloon the arteries or need to place a stent.....it is another wait and see situation.

Last Wednesday, an Early Intervention physical therapist came to evaluate Lucy.  She found that Lucy is averaging about the same as a three month old.  It looks like we will qualify, which would mean speech and physical therapy in home.  Great for the winter so we don't have to take her outside.  We have a meeting with the case manager and all the therapists this Thursday, so we will have a clear plan after that.  Prior to the meeting, we wanted to complete a swallow study so we would have some information to provide the speech therapist.  For those that don't know, a swallow study is like a x-ray video.  The therapist placed Lucy in a chair (it looked like a roller coaster seat) and buckled her in.  Then they try both liquid and puree and watch how she swallows.  They watch for her tongue to press against the roof of her mouth,  a swallow and the food to pass through to her esophagus.  This is to make sure she will not aspirate.  She passed!  We got the go ahead to start trying puree foods.  It's not going great, but we're just going to keep trucking along.  After the swallow study, we had a short conversation about a g-tube.  The difference is this tube goes directly into her stomach.  They call it a button...and it will require surgery along with a three day hospital stay.  Angela (our cardiac nurse) says if Lucy isn't eating all calories by mouth at a year, they would require it.  We have the option to do it sooner and there could be some benefits. 
    1.  Vomiting will decrease
    2.   Irritation in her nose and throat will decrease
    3.   Eating by mouth could be more interesting
    4.   Her feedings can be done quicker
    5.  Medication can be administered through the tube.
    6.    NO TUBE TAPED TO HER FACE

Can you tell which one is most motivating to me?  I just want to see her whole face!!!!
On the downside, it is still surgery and another trip to the hospital. 

Stranger danger has clearly set in as well.  Just ask my sister, who got the joy of watching her and for almost the entire time Lucy cried.  Since we can't take her a lot of places we encourage visitors!  Just call to find out a good time and as long as you are not sick come on over.  We can .not guarantee she won't cry, but we will try really hard to get a smile out of her.


Her new favorite thing is to hold her feet in the air, getting those abs strong.

Tricking her into tummy time.

Her 8 month picture. Happy 8 month birthday miracle baby.  Yes, I forgot to take one earlier, so this is right at bedtime

 

Practicing sitting with some couch support

Good Samaritan

 Lucy and I ventured out for our second solo trip.  It was just a quick run to Target to pick up some things I needed for dinner.  Lucy was off her feeds and I knew she could manage a half hour off oxygen (more on that later) so it was just Lucy in her car seat, me and my purse.  We got to target and I scurried around picking up the few things we needed, still very nervous to take her out and about.  We get through check out and she is still taking in the sights.  At the car, I placed my purse on top of the car and got Lucy out of the stroller and into the car, then I packed up the stroller in the trunk and hopped into the car to hurry home.  Yep, you guessed it.  I pull into our condo parking spot and my purse is not anywhere in the car.  I had driven off with it still on top of the car.  Freaking out, I turn around hoping that it is possibly still laying on the pavement close to where I parked.  No luck.  I must have had a look of panic on my face because as I walked into Target and up to the service desk, the lady  looks at me and says "Elisabeth Shannon?"  In which I respond, "yes!  Did someone turn in my purse?"  Low and behold, there it was and I breathed a sigh of relief.

So thank you to the kind person that found my purse and took it to the service counter.  The time, energy and money you saved me along with what would have been many tears is much appreciated.

We had the Early Intervention therapists to our house on Friday.  The developmental therapist said there were some physical delays and she would refer a physical therapist to come out to evaluate Lucy.  The speech therapist saw over a thirty percent delay, but said that for Lucy to be eligible she would need a delay in two areas.  We will wait to see if the physical therapist can see a thirty percent delay as well.  Lucy is really close to sitting so we are pretty excited, but maybe we should hold off practicing until the PT can see her.  Yeah right! 

 

If she ends up not being eligible, we will look into a private speech therapist, because I am having no luck with dips, the bottle or a sippy cup!  I definitely could use any help if we want that tube off any time soon.  We have gone up on bolus feeds, which is exciting.  She is up to four a day, then back to continuous feeds overnight.  In a week we will increase to five a day.  Once she is tolerating these, we will look to increase the volume and decrease the time.  Lucy takes her feeds over an hour and we give them every three hours.  It is nice to have her unhooked for two hours.  As we decrease the time, she will be off the machine even longer.

The oxygen has officially defeated me.  I have to admit I've cried a couple times in the last week.  As of my last post we were doing six hour tests off oxygen and everything seemed to be on track.  Last Thursday our home nurse came and she told me while we are doing tests to remove the cannula as it blocks her nasal passage.  When removed it can help to improve her numbers.  Unfortunately it seemed to do the opposite.  This past weekend I did two tests with the cannula off (it was nice to see more of her face).  After two hours, I checked her saturation, she was at 65.  I freaked out!  I watched the pulse oximeter for another five minutes and it didn't go higher than 70.  I immediately put her back on oxygen and didn't continue with the test.  This happened again at the next test, we have decided to give her a break.  We adjusted her oxygen to a little higher than one sixteenth of a liter.  We will watch to see if her saturation gradually increase, then we will think about trying again.

We see Lucy's cardiologist this week, so we will discuss our next steps.

Lucy is always pulling at the cords on her face, so I gave her an extra NG tube to play with.  It seemed to do the trick.  She was occupied for a full ten minutes.

 

Oxygen support

I am quite a few days late this last post, but time sure does seem to slip through my fingers tips. Our last appointment was over two and a half weeks ago, I guess maybe days late is a little generous.
We had an echo and it showed the digoxin is working.  There was increased function in her right ventricle which is huge!  We want that to continue increasing so that the chances of Lucy needing a transplant get smaller and smaller.  Doctor Husayni also decided to stop the captopril (a blood pressure medication).  Long term side effects of this medication can be a dry cough.  Since most of her throwing up (which has continued daily) is cough induced the thought was if we stop the medication, then the cough stops and she will stop tossing cookies two to three times a day.  We have yet to see a change in her cough but are really hoping and praying another week or two will make the difference.  We were going to make another change to medication, but I asked if we could work on removing oxygen.  The doctor was on board and so the slow progression to remove oxygen begins.

  Since the appointment we have gone from a half liter of oxygen all the way down to a sixteenth.  Just like everything we do with Lucy, it is slow and steady.  We started at a quarter, right after the appointment and each week we decrease a little more.  During the decrease we have also been doing some tests off oxygen.  We do anywhere from three to six hours off and hook her up to the pulse Oximeter to check her saturation.  I was so nervous for the first test that I was checking every half hour.  Now I can go about two hours before checking.  Yesterday we did six hours off and at the end of the six hours she was still reading 82 percent.  We will most likely get to remove oxygen all together within a week.  Let's just hope we don't have to go back on it.  That was the main reason Mike and I decided not to push for removal right away.  We didn't want to remove it and then a week or so later go back on and have to be on another month.  I will say moving from the concentrator (which sounds like a generator) to oxygen tanks was a very pleasant one.  We can actually hear ourselves think!

A sneak peak at what Lucy will look like without the cannula.  Is that a cheek I see?

The bolus feeds have been going well too.  We hit a little snag mixing in formula as our milk supply is decreasing and in another month we will need to move to full formula.  Who knew that baby formula could be hard on their tummies.  Does that even make sense?  We are now doing two bolus feeds at 70 ML and we have increases her continuous feeds to 30 ML/hour.  This coming week we will be adding another bolus feed and have requested the next steps in the feeding plan.  It is quite exciting to see her progress and hope she will be able to be unattached from the feeding machine for more than an hour at a time.

This past week I met with our care manager at early intervention, we went over some basic information and she put in the order for the therapists to come see Lucy.  Next Friday the developmental therapist will come out for her assessment.  The assessment will determine if Lucy is eligible for treatment.  I can't decide which way I would prefer the assessment to go.  If she isn't eligible that would mean she is on target for her age.  For developmental, I could really go either way, but I am praying she'll be eligible for speech therapy.  Obviously it's not for talking, but for eating.  I just know I could use all the help I can get for Lucy to start eating by mouth.  We should know in the next two weeks for sure.  Once the assessment is complete they would then determine how many visits she would need on a monthly basis.  So next week should be a big week for us.  Maybe I can get my act together to post an update in a reasonable amount of time.  Wait and see!


I'm working hard on tummy time

I smile all the time, just make funny noises!

And I can sit, with some support.  Soon maybe on my own!   Oh and sometimes we play dress up in my fancy clothes.

Monthly birthday pictures

We did not get professional pictures after we left the hospital, but we have been taking plenty ourselves.  Here is each month since birth.

February 13th

March 12th

April 13th

May 13th

June 13th

July 13th

August 13th

Land of Lucy

  We had our last cardiology appointment on August 14th.  We were due for an echo to see how the digoxin was helping the heart squeeze, but we just could not get Lucy to settle down.  She was slightly over tired and every time it seemed she was relaxing, the minute the ultra sound probe touched her, it was complete hysterics.  The tech was able to get enough pictures for Dr. Husayni to give us a three week break.  Good thing about a three week break is no hospital.  Bad thing about a three week break is no major changes. 

 Mike and I finally had a night out.  We were able to celebrate a good friends marriage.  It's nerve wrecking until you leave the house.  Then it's almost relaxing, just to have a few hours to kick back and have fun.  Thanks grandma and grandpa for letting us get out!

 We are still working on taking the bottle but have not made as much progress as I would have liked.  I am reluctantly realizing that  Lucy may not take a bottle and will go straight to puree foods.  This can happen with heart kids but I was hoping we would catch on to the bottle in hopes of getting rid of the NG tube.  The feeding through the tube is actually great, it's the constant fear  she will pull it out and I will need to put it back in at home by myself that's the problem.  But the likelihood is we will have the tube until she can eat all her calories in puree food.  We have gone up to 25 ML an hour and are going to test out bolus feeds.   I spoke with Angela and she provided a schedule that will slowly allow us to test the waters.  We had our first try on Wednesday and Lucy handled it well.  She was unattached from the feed machine for two hours.  I wanted to run around the house with her!!!  It will be so amazing when she will be tube free.  I'll probably cry.  TYPICAL!  It's a ways away, but something that we can barely wait for. 

Our next change is we will be starting therapy at home.  Physical therapy and speech will come to the house and work with Lucy.  It's possible with their help we will get to the bottle.  But we'll just have to wait and see.  We started tummy time this week as well.  She can make it about two minutes before getting irritated.  Our goal is four minutes twice.  Lucy has very good head control, we hope our PT is impressed.  We are also very close to sitting.  We are so proud of her progress, she is such a trouper.  In reading information online about milestones we are about one to two months behind.  Not bad for being sedated the first two months of your life!!!!  I think by a year we will be all caught up!

We love to watch her personality develop.  Her favorite thing right now is the alphabets.  She could be on the verge of tears and you sing the alphabet and she is all smiles.  Her least favorite thing is getting her cheek patches changed.

We are so grateful that Lucy is stable and making progress.  We thank all for the continued prayers for our family.  As Lucy is growing we are feeling our condo shrink and shrink.  Prayers for direction on selling the condo and buying a new home would be greatly appreciated.  We would love for Lucy to finally have her own room!!!!

Happy 6 month Birthday

 Last week we seemed to see a pattern emerge:  nap for one to two hours, play by herself for half hour, entertain her for hour to two hours and back to sleep.  It was a nice routine and I have to say I enjoyed working at home with minimal crying throughout the day.  Enter Wednesday's pediatrician appointment.  We got some measurements: she is back over ten pounds after her latest hospital stay and is twenty two inches.  Then we found out we got the go-ahead to start vaccinations from our cardiologist.  She got two shots, one in each thigh and she did very well.  She screamed her head off, but as soon as I was able to pick her up she calmed right down.  Our pediatrician said she could be a little fussy for the next twenty four hours.  I guess we have a different idea about what 'a little fussy' means.  She was up at 3 am that night and crying which continued through Thursday day and into the night.  Mike and I should have known, but instead we started to freak out a little bit.  Apparently it didn't even occur to us that the vaccinations would make her this fussy.  But at our cardiology appointment on Friday, both Angela and Dr. Husayni waved off the craziness and were positive it was the vaccination.  We'll be ready for the next round.

The cardiology appointment was good as well.  We got another x-ray to checkout her lungs.  I was able to see the x-ray from her hospital discharge.  The difference was night and day, all fluid was gone.  We had an echo as well and she slept through most of it, although it took me about ten minutes to get her to calm and finally fall asleep.  After they reviewed the echo, Dr. Husayni and Angela came into talk to us about what they saw.  The squeeze of Lucy's heart has decreased a little more.  As Dr. Husayni is talking to me, I am staring daggers at Angela waiting for them to say the dreaded words:  'We are going to admit her'.  She catches me and says we are NOT admitting her.  Phew.  Instead they added a new heart medicine to help the squeeze of her heart.  We a fourth medicine to add to her routine.....digoxin.  A lot of HLHS kids go home on digoxin after the Norwood.  This medicine can lower the heart rate and at the time of her discharge Lucy's heart rate was dipping into the 90's when she would sleep, so she was not sent home on it.  We were told that the decrease in heart function can happen after the Glenn and this medicine will help.  We will have another echo at our next appointment to see if this medicine is helping.  The sad part is that due to adding this medicine Dr. Husayni did not want to make any other changes, so unfortunately the oxygen stays.  And if I'm being realistic, we will probably be on oxygen for at least another month.  Sigh.

Last but not least, Lucy is six months old today.  Happy Birthday little girl.
Just a peak into her short life so far, 182 days on this earth.
118 days in the hospital
3 open heart surgeries
5 times intubated
2 catherizations
8 cardiology appointments
3 pounds at birth, now 10 pounds (tripling her weight)
16 inches at birth, now 23 inches
countless x-rays, echoes, IV's, and blood tests
and finally the biggest....we are finally out of newborn clothing and onto 0-3 month.

I wish I had kept track of how many miles we have driven, but at the beginning I surely did not anticipate our journey would take us where we are today, but we wouldn't trade any of it because Lucy is amazing.

Admitted

  Yes, we were back in the hospital.  I had a feeling all the spitting up and throwing up was most likely going to land us back there.  Sure enough Thursday morning Lucy was definitely not herself.  After a morning spit up, she cried hysterically and holding her in her favorite upright position wasn't helping.  I stopped her feeds and my aunt was here to hold her and try to comfort her until  our appointment later that day.  Lucy was finally able to fall asleep and we started her feeds back, mixing breast milk with pedialite but decreasing her volume to 18 ML per hour.  We wanted to keep her hydrated but not upset her stomach (her feeds are usually at 24 ML per hour).  Well that didn't work because about a half hour after starting the feeds she threw up again.  At this point her face was starting to look puffy as well.  At about 11 am, I called the nurse and she said there is no point to wait for the appointment.  So we packed up and about half hour later we were on the road.

We arrived at the hospital and they sent us for labs and an x-ray.  Luckily they didn't need to place an IV to draw blood.  Instead they pricked her heel and squeezed to get the blood.  She didn't really like that either, but it beats an IV.  We didn't even get in the back room for our echo when Dr. Husayni came out to the waiting room.  I knew we weren't going home.  Turns out the x-ray showed fluid around her lungs that was causing pressure.  Add to it her 'new flow' pattern of blood directly to her lungs and it can bring on severe discomfort along with throwing up.  Dr. Husayni said they could send us home on some extra diuretics, but being so close to surgery they preferred to observe with the hopes that the fluid would clear up on the mornings x-ray and we could be discharged.  The good news is the medication was oral, so this was the first admit without being poked (I'm not counting the heal prick, that was nothing).  Unfortunately Friday morning's x-ray although better was not clear enough for discharge so night number two.  On the plus side, Lucy's demeanor Friday and Saturday was a complete one eighty. We saw lots of smiling, talking and playing with her rings.  Saturday evening we were discharged to close out our third hospital visit in less than six months.  Yikes, hard to believe she will be six months next week.

 

As of now we are working on getting her back to normal, then we can work on getting all that junk off her face.....hopefully in the weeks to come we can do an oxygen test.  Her saturation's have been regularly in the mid to low 80's.  We are sure Lucy will be oxygen free in no time!  Then we will slowly start to work on bottle feeding again.

 

 

We can't thank you all enough for following our journey and praying for us.  I'd like to request prayers for a family we met while we were in the hospital.  Their three year old daughter has HLHS and was in the hospital due to declining heart function.  The doctor's determined that medication would not be enough and she is in need of a transplant.  Please pray that a heart become available for this family and for the family that decides to donate the heart!

Settling in, sort of

We are two weeks into home life and we are already seeing Lucy returning to the happy baby she was prior to being admitted to the hospital in June.  After a couple days at home, our nurse suggested we put her on Tylenol regularly to alleviate her pain and any discomfort she may be feeling.  I have to say once we started that we saw a nice change.  We kept her on regular doses for three days and then changed to a dose just before bedtime for three more days.  It just amazes me that children can be on Tylenol for pain management, especially after open heart surgery.  I mean I was on stronger pain medication for three weeks following the c-section, I kind of feel like a wimp.

  On July 22nd we had are post-op follow up appointment.  You can tell Lucy has not forgotten what happened as any time the tech or nurse practitioner tried to do anything she went nuts.  We couldn't even get a good blood pressure.  Then I would get her calm and they would try to listen to her with a stethoscope, as soon as it touched her....crazy.  The steri-strips came off and her scar looks great.  It's still healing so we have to continue to watch for infection and her sternum is still fragile so we are off tummy time for eight weeks.  The only change we made during the appointment was to decrease her lasix (the medication that helps her get rid of fluids).  We went from three times a day down to two times a day and just had to watch for puffiness. Sure enough we moved to quickly, by Thursday morning her eyes were puffy.  We called the nurse back to let her know and we went back up to three times a day.  With a two bouts of throw up, Thursday night and Friday morning our home nurse said we needed to see the doctor.  So off we were to the ER.

Upon arrival, the ER doctor came to take a look and asked about what was happening.  They ordered some labs and an x-ray.  The nurses came in to put an IV in and I must say, I think I'm getting stronger.  I used to have to leave the room when I knew a procedure was going to make Lucy get hysterical, but this time I stayed in the room, held her hand and talked to her until the needle was in, the blood was drawn and IV was securely taped.  And I didn't even cry, I'm serious, that's a miracle.  Ask any of the nurses in the PSHU, I can break down in tears at a mere question sometimes.  Lucy cried her eyes out, but once they were done.....back to normal.  We spent the entire day there and around 3:30 our cardiologist came in to assess her.  Everything looked okay and her oxygen saturation was good so we were discharged.  Thank gosh!

This past week has been more spit ups, throwing up, calls to our home nurse and to the doctor.  The worst was Wednesday as Lucy threw up three times.  However after she seems great, all smiles and cooing.  After the third time, we switched her over to Pedialite for a few hours and back then back to breast milk.  Who knew how stressful spit ups and throw could be.  We are hoping to get to the bottom of this at our cardiology appointment Thursday.  And we really hope there is not a need for her to be admitted.  The appointment should entail an echo, x-ray, EKG and possibly an oxygen test to get one more tube off her face. 

Home already

Seriously, I don't even know where to start......I cannot believe we are home already but we are so happy.  I have read online and heard from a lot of people that the Glenn is the easiest of the surgeries.  Average recovery is around six days.  Based on our history I laughed at that.  Plus when I spoke to Dr. Ilbawi's nurse while signing consent she said recovery for a 'sick' baby was about fourteen days.  Lucy was considered 'sick' because she was admitted early due to the decreasing heart function.  We were hoping to be out of the hospital by the end of July.

  The three days following surgery were pretty much a repeat of the last.  First weening heart medication, then removing chest tubes and last pain and sedation.  This time however it went much quicker.  We were most worried about chylothorax.  We did not want to go on formula again.  Thursday morning her chest tube was showing a milky drainage and we were so disappointed.  But then during rounds the nurse practitioner said it didn't look like chyle but more like lipids.  Sure enough when they checked the line in her chest it was almost all the way out so the lipids were leaking into her chest and out through the tube.  When they pulled the line the drainage went back to red.  NO CHYLOTHORAX!!!!  Due to the IV line being pulled they ended up stopping some of her medications.  The problem with no line is they have prick her for any draw blood.  We didn't want that so the surgeons came in to replace it.  Unfortunately because of Lucy's size it is very hard to get a arterial line in place.  The surgeon tried a bunch of times with no luck.  They finally decided to have the doctor from the cath lab come up and place the line using ultrasound.  He was successful but the line was pretty much in her face (I'll post a picture later).

 Friday morning they stopped her pain medication.  Three days after open heart surgery she is on Tylenol as needed.  These heart warriors are amazing!  Saturday morning they pulled her chest tubes and after stopped her sedation medication.  Officially we were off all IV medications.  We were able to hold her again.  We don't like holding her with chest tubes so we always wait until they are removed.

  Sunday Mike and I split time so someone would be at the hospital all day with her.  We just hung out and she was able to have a couple visitors.  Then we heard that they were planning to move her to the floor later that night, five days after surgery.  A bed on floor two wasn't available until Monday morning, so we walked down there around nine in the morning.  During rounds later that day the doctors were talking about sending us home the next day.  Yippee, but I wasn't going to believe it until the discharge papers were submitted.  Sure enough Tuesday rolled around and they were finalizing medications for home.  One week after heart surgery we were headed home.  A couple things are different between this trip home and last time.  Her medications are more frequent (two are given three  times a day and two others twice a day).  We are also giving her Tylenol for pain on a regular basis.  Her incision is not yet healed so we have to be careful picking her up and bathing her.
 
Tuesday afternoon and night was a little rough.  After being poked she doesn't trust that a diaper change is just that so she goes a little crazy for those.  She is still getting used to being at home so she is crying a little more.  The loudness of her cry has increased, which is awesome when holding her up on your shoulder.  Each day has gotten a little better and we are hoping by next week she will be back to her old smiling self.

We have yet to resume bottle trials but that will come in time.  Her newest thing is reaching for things and bringing them to her mouth.  We have heard that the Glenn is a game changer and we are hoping this is true for Lucy as well.  Only time will tell.

Next week we have a follow up with the surgical team, then we are back to our cardiologist following.  She was sent home on oxygen so we will be looking to remove that and get one more thing off her face and make her a little easier to take places!

Have a Heart

Come out to celebrate Lucy!!!

from my perspective

I know I'm late with this update but I'm working on recovering so we can get out of this place.  Plus I've been sleeping a lot, so there is little time for me to sneak on the blog.  Anyway, like last time we'll follow my day through surgery....here goes

Before we start I would like to thank you all for your prayers and thoughts.  It is great to have so many people on my team.  I love you!

5:00 am   I'm up and smiling ready to play for a little before my big adventure.
               Luckily my nurse has some free time.

6:00 am    I'm already back asleep, it takes a lot of my energy to be this cute.

6:10 am   Mom and Dad arrive and talk to the nurse.  She tells them the surgical
                team will come anytime after seven.  They are over my crib watching
                me sleep, creepy!  Parents can be so weird.

6:45 am    I know they want to cuddle a little before I hit the stage so I wake up.
                I get to spend time in both their arms (secretly I love it there, but
                don't tell them I'm trying to be a big girl)

7:30 am  The anesthesiologist comes to the room.  We've met him before because
               he did my Norwood.  Since I barely have any bells and whistles
               (three to be exact) to hook up to the mobile monitor hair and make-up
               goes quick.  And only two people are needed to walk
               me to the OR.

7:45  am   We get to the stage, Mom and Dad give me a bunch of kisses and
                 we say 'see ya later' I am ready for this, I grew big and strong
                 while I was at home.

8:00 am    Psych!  We are in a holding pattern due to an emergency.
                 I start crying cause I hate waiting.

8:30 am    They give me some sleepy medication through my oxygen cannula
                 so I will stay still and not cry for awhile.  Once I'm out they put
                 in my breathing tube, a new IV, my arterial line and scrub my chest.

9:15 am    We have officially started.  Dr. Ilbawi makes the incision in my chest.
                 First thing he does is clear out old scar tissue.  We need to make
                 sure my zipper is as pretty as can be!

10:00 am   I'm on bypass now and they have begun.  Like my mom told you
                  in the last post, they will take the vein that carries the blood from
                  my upper body to my heart and re-route directly to my lungs.
                  Usually they take down the Norwood, but since my pulmonary
                  arteries are on the small side they left the sano shunt in to help.  They
                  put a band around it to restrict blood flow.  This will come out when
                  I have my last surgery.

12:00 pm   Surgery is complete.  They are closing my chest.  This time they don't
                  need to leave my sternum open so I won't have to get it closed in
                  a couple of days.    Once they close me up, they will extubate.  If I
                  breathe on my own okay they will leave that stupid tube out.
                  Other than my raspy voice I'll never know it was in.

1:30 pm    I am back in my room with Mom and Dad.  I came out with way
                 more bells and whistle...I kinda forgot how much this stinks!
                 I'm crying a little and Dad says this cry is worse than my crazy
                 red-in-the-face cry.  Mom is emotional, every time I cry she gets
                  tears.  Should come in handy when I'm older!

2:30 pm    While the nurses get me situated with everything the p's
                 grab some much needed lunch.  They get to see Germany
                 score 5 goals in 20 about minutes, that has to be some kind of
                 World Cup record.

4:00 pm   I'm still making noises and moving around quite a bit, so
                we up my pain medicine a little.  Within a half hour I am out.
                 Mom and Dad leave to get some much needed rest.  I'll
                 most likely sleep through the night.  I need it if I'm going to recover
                 quickly.  Shouldn't be hard to beat my last recovery of two months!

As of Wednesday, I am still really puffy (really hoping there are no pictures) and have had very little urine output.  They are starting me on a lasix drip (medication to make me pee).  They say sometimes when you are on this medication for a while it takes a little more to work.  I know a secret....my catheter is clogged.  Once they take that out, I'll pee like a champ!  They started feeds too.  Thank gosh because I'm starving.  We are really hoping I don't have chylothorax again so I can keep eating breast milk.  I've become accustomed to a certain level of food and that formula is the pits!  Stayed tuned for my progress.  My mom will update you in a couple of days