It's official

It's official!  I am not longer scared to death of the NG tube.  Since coming home back in May every time the tube needed to be changed I made sure there was an appointment to coincide with the change.  Through her first ten months she pulled it out once at home.  It was quite the debacle.  It took my mom and I three tries to get it right and ended with a broken vase and five votives.  I really should be thanking the oxygen cannula for it's service of making it hard for Lucy to get her hands close to the NG.  However, since coming off oxygen Lucy has given me some practice and pulled it out three times.  The first time was at eleven at night and half asleep I just pushed it back in.  The second time she was due for a change (roughly every thirty days), my dad and I removed all the tape and put a fresh one in.  The last time was that same night.  Since, we have graced her with a tape moustache and we haven't had another incident.  I will still be glad when we are done with it!

Showing off her moustache with a selfie

We had our first follow up appointment with cardiology since coming off oxygen and her SAT were ninety percent!  She is over seven kilograms (15 lb, 8 oz) and twenty six inches long.  We had an echo and ekg, both looked good.  The bad news is that over the course of two months the coarctation of the aorta has narrowed.  This was ballooned back in November.  The doctor said we will follow up in a month for another echo and if there is more narrowing we will need to intervene.  What that means right now, I'm not sure.  Possibly a stent.  What I do know, is because of the trouble they have accessing with a catheter, it is likely they will need to make an incision to do whatever needs to be done.

Therapy has been going very well.  Both speech and physical therapists are impressed every week with her progress.  We can thank our parents for being so diligent in doing her exercises daily to help her get strong.  Lucy so desperately wants to be mobile.  We are so close to crawling.  We have started some sit to stand exercises as well and she loves to be standing.  It will be nice in the new house she will have a huge family room that is all carpet as her playground.

Back in October when we has our evaluation with Laura (speech therapist) we talked about the G-tube and the likelihood of having surgery was very high.  This was because Lucy's oral aversion was so bad.  Two and half months later, Laura is telling us her progress is so great, that a trial without the NG tube is very possible before we go down the road of surgery.  Although I know this doesn't mean surgery won't happen it is something we very much want to try.  If there is anyway we can avoid surgery we will try our hardest.  She is now tasting a lot of different table food: avocado, noodles, tuna, chicken, baby puffs, cheese, yogurt and usually a bite of whatever I'm eating.  Our biggest struggle will be drinking as she currently doesn't really do any of that.  The next couple weeks will be working to get her taking sips of milk and water using sippy cups, regular cups or even straws.  Whatever will do the trick.

Lucy has figured out that cameras mean smile and she really hams it up.  She hasn't quite figured out the flash, so we have many, many shots of a blinking baby.

We would like to thank all for the prayers surrounding our housing situation.  Prayers were answered and we will move next week into our house.  We are beyond excited for the extra space.
As we venture into the new year, please pray that the narrowing in Lucy's aorta does not need more intervention and that her eating and drinking continue to progress.

reflection

I took a class at church about seven or eight years ago and the instructor told a story about how he kept a prayer journal.  During the years he would go back and check off all the prayers that were answered.  What an awesome idea and trust me, it's hard to do.  I've started at least four of them.
Then I realized that this blog is just that and I have a record of the prayers we've asked for (except for some of the simple ones, like please let her sleep through the night).

So I read the entire blog.  Sometimes I can't even believe we have been through all that.  I took all the prayer requests and compiled them.

For her growth and movement, improvement over the last week and continued activity
For blood flow through the umbilical cord
For our doctors that will recommend what is our best option
For Mike and I as we learn about our options and have to make a decisions.
For Mike and I to have a sense of peace and calm as we work our way through this unexpected news.
Prayer for her stability and as much peace of mind for Mike and I as possible.
Pray specifically for a room to open up at the Ronald McDonald House,
For Lucy's strength
God's hand over the doctors and nurses that are treating her.
Prayers for patience during this process are much needed!
Strength for Mike and I as we wait through surgery
God's watch over the cardiologists and surgeons as they perform the hybrid procedure
For Lucy's strength and quick recovery
God's hand over the entire process
Strength for Lucy as she deals with this trauma and a healthy recovery
Strength for Mike and I as we deal with each day as it comes.
 as we continue to commute to the hospital and get limited time with our daughter.
God's watch over Dr. Ilbawi and his team as they perform the Norwood procedure
For Lucy's strength
Strength and peace for Mike and I as we wait through surgery
God's hand over the entire process
As I am nearing the end of my leave, we ask for prayers for a clear plan for Lucy's care.
Pray for her ongoing recovery and continued strength for Mike and I.
Prayers for Lucy's irritability.  That she can be calm and is able to get some rest.
Pray for Lucy's continued progress and for a easy transition to home living.
We ask specifically for prayers about Lucy's heart function.
Prayers for God's hands on all aspects of the surgery Wednesday would be greatly appreciated.
Please pray that a heart become available for this family and for the family that decides to donate the heart!
Prayers for direction on selling the condo and buying a new home would be greatly appreciated.
Prayers for a successful procedure and a good night's rest for Mike and I.
Prayer for a safe and successful surgery and some peace and understanding as we deal with this unexpected news.

As I read through all of these I notice most were answered, maybe not exactly as I requested and some still might be a work in progress.  Um, my patience and understanding.  So many times when prayers are answered we forget to sing praise.  So thank you to all who prayed so diligently throughout this year.  Praise God for giving us (and mostly Lucy) the strength to make it through this year.  Here's hoping in 2015 Lucy can be less of a warrior and more of a kid!

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.