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!