delayed

Surgery has been rescheduled.  Last Friday I spoke with the nurse that was going to do Lucy's pre op appointment.  She said if Lucy shows any symptoms that would indicate she is getting sick to call.  Lucy needs to be healthy going into surgery in order for recovery to be as short as possible.  I didn't worry about it since Lucy hasn't been sick since she came home a year ago.  Sure enough early Monday morning at about 1 a.m, as I was trying to rock Lucy back to sleep.  She seem rather warm.  I took her tempurature and it was 100.3 degrees.  At that time I called the cardiologist to see if there was anything we should do.  He said to keep an eye on her tempurature and look for any other symptoms.

Monday was a lot of sleeping, crying and tylenol.  Tuesday we made it to the pediatrician where she confirmed an ear infection and put Lucy on antibiotics.  Lucy will be  antibiotics for ten days.  You guessed it.....surgery is delayed.  They would like her healthy for a week after her antibiotics are done.  We have tentatively scheduled surgery June 4th.

Lucy had some trouble settling in her bed on Sunday night when her fever spiked, so we brought a pillow down to the family room and we snuggled on the couch.  All day Monday and Tuesday she did more lounging (mostly sleeping) on the couch.  Even sick and puffy she still looked adorable.

and I managed to sneak a smile...hope she can get back to her normal smiley self soon.

number 5

We will head back to the hospital after a five month break for surgery.  We got the call from Dr. Husayni last Thursday afternoon after the conference.  He said the team went back and forth on which path to take, but ultimately settled on surgery.  This will be number five.  We were really hoping to stay out of the hospital in 2015, but we are prepared to do whatever it takes to keep Lucy as healthy as possible.

The narrowing of the aorta is restricting blood flow and putting extra stress on her heart and the team felt that a catherization would only delay surgery.  This will be the first time we are not admitted prior to surgery.  On Monday afternoon we will head down to the hospital for a three hour pre-op appointment.  They will do blood work, x-rays, etc.  I assume it will not be a fun afternoon.  Then Thursday we will pack up for an undetermined hospital stay.  Of course I asked what the average recovery time is.....Katie (Dr. Ilbawi's nurse) says, I can give you average, but you know Lucy marches to the beat of her own drum.  We can pray that this time, she can make the average recovery time and be out in five days!

I tear up as I am writing this, not because we need surgery, but because I don't want to be in the hospital.  The hospital sucks.  It messes with Lucy's schedule.  It is exhausting and stressful.  It isn't home!  It is amazing how five months can feel like forever!  When I counted how long since our last discharge, hard to believe it was only five months....November 30th.  I think my biggest fear is how Lucy will do now that she is mobile.

Back to surgery, so there are two approaches to fixing Lucy's aorta.  Not being in the hospital, has one disadvantage.....I don't get to sit down to discuss exactly what is happening.  The surgeons will either (in lay men's term) cut out the narrowing and reattach the aorta or they will patch the narrowing to remain larger.  They will decide what approach to take in the operating room.

Prayers specifically for the following would be greatly appreciated
-Lucy's medical team as they operate and care for her
-Lucy to cope with surgery and the change in her routine
-Lucy to recover quickly
-For Mike and I to handle this unexpected hospital stay with grace and patience

Out of the woods

There is an article circulating on social media called 'Out of the Woods' which details what it means to be a parent of a chronically ill child.  While I don't consider Lucy a chronically ill child, surgical intervention will never truly 'fix' her heart.  The article talks about even on the best of days parents live in a world where they are always waiting for the other shoe to drop.  I would not say we dwell on the bad or are constantly thinking about when something will happen, but you can imagine why appointments can be surrounded with anxiety and worry.  Last year we had three unexpected hospital admittances and one unexpected surgery.

Most of the time I go into an appointment day with the highest of hopes: a three month pass and the reality of her diagnosis: a possible admittance.  Last Thursday we landed somewhere in between.

We arrived a half hour early so we could visit some of our favorite nurses in the PSHU.  We were lucky to see a lot of the nurses we knew from our very first stay were working!  Lucy was unsure at first, but in true Lucy fashion warmed up to the attention quickly.  The nurses even paged the attending cardiologist for a couple of cuddles.  Celebrity status?  I can't decide if that's a good thing to have at a hospital!

We headed to our appointment for a scheduled EKG and echo.  It's been awhile so I wasn't sure how Lucy would handle everything.  She did well with weight, height and vitals.  Then I got her undressed for the EKG and the minute I laid her down she started crying.  We made it through and then moved onto the echo.  More of the same until, wait for it......we played the theme song to the TV show Big Bang Theory.  Weird, right?  Whatever does the trick.  That song and video combo puts her in a trance.  We played it about eight times and then my dad and I needed a break (we moved onto bubble guppies).  But it was by far the easiest echo to get through.  After Dr. Husayni reviewed the echo he came into the room to discuss the results.  He told us that the coarctation of the aorta had narrowed  to it's previous size and we would need to intervene.  They are discussing the case this week and will call with a decision.  He stated that we could probably try a catherization to balloon the aorta (using a bigger balloon) and hope it takes this time.  The catherization should be (using the term ,should be, very loosely) an overnight stay.  Our past would indicate otherwise and like usual we will wait to find out.  Lucy is definitely more aware now so I am hoping if I talk to her about what is happening it will help her cope a little better.

Crafting her pool skills

We continue struggle with Lucy's separation anxiety but we know it is completely normal.  We have started a bedtime routine because going to bed has also been a struggle.  We've added changing to pajamas and teeth brushing.  We are hoping these two things will help her settle better at night.


She always wants what mom has.  I promise the glass was empty and she was supervised!

Prayers surrounding this next hospital visit would be greatly appreciated.  Specifically that it does not impact Lucy's progress in her therapies.  Also, that we are able to get in and out in just one night!

Easter baby

It's crazy to think that at just over a year old Lucy got to attend her first extended family holiday party.  Easter was at my parents this year and Lucy was able to meet some of her great aunts and uncles for the first time.  As usual she was the center of attention and loved every minute.
 

Lucy had her last synagis shot at the end of March.  Synagis is a prescription injection of antibodies that is given monthly to help protect high-risk infants from severe RSV disease throughout the RSV season.  Our synagis nurse Phylis is amazing and loves Lucy.  She has gone to bat for us in helping to get this shot covered (it's expensive!!!).  Lucy however is not a fan......and I guess I can understand why....she always gets a shot when Phylis shows up.  The last shot seemed to be quite traumatic.  Lucy was hysterical at the sight of Phylis.  The following day I took Lucy on some errands and as I took her out of the car, she started crying immediately.    At our next stop, same thing.  When I got home I told Mike, we need to start taking Lucy places other than the doctor!  Since then we have gone on small errands to Target, the mall and walks around the neighborhood.

We had our six month review with Early Intervention.  It was so encouraging to see how far we have come, especially since we have only been having sessions for four months.  We brought on services in October, but due to our November hospital stint, didn't start with any of the therapists until December.  A positioning chair and g-tube surgery were almost deemed necessary in October.  We never needed a positioning chair.  I credit our parents for diligently doing Lucy physical therapy exercises daily.  As of this weekend, Lucy is walking with her push toy on her own.  She will most likely be walking in a month.  Her feeding is progressing well too.  We are focusing on liquid intake.  Our goal after the trial was 1 ounce of water and formula a day.  We are working on consistently taking 3 ounces now (only a month after the trial).  If she can consistently drink 16 ounces of liquid a day we will start discussing another trial.  Hopefully since I have been through it before, I'll be less of a mess.  We also had an occupational therapist come in for evaluation to possibly help with Lucy's sensory issues and some bedtime issues.  The OT said the Lucy is a pretty typical one year old, but she can give us some skills to help with her coping.  One thing that was recommended is social stories.  This would be where we take pictures of people and places and before we leave the house on a trip, we would show Lucy the pictures.  For example, for hospital appointments we could show her pictures of Dr. Husayni, nurse Kelly, the hospital and possibly a room.  The social stories would allow her have an expectation of where we are going and what will be happening.

We go back to the hospital next week for our first appointment since February.  It's the longest span without a visit or stay at hospital at ten weeks.  The week leading up to these appointments can be filled with anxiety because we don't know what can happen.  We only hope to get another three month pass!

When we first found out about Lucy's diagnosis, I knew somehow I wanted to become involved in raising awareness and helping other families.  On June 13th we will take our first steps as we walk in the Congenital Heart Walk, under team 'I Love Lucy'.  We are fundraising to support Adult Congenital Heart Association and the Children's Heart Foundation.  If you'd like to support our fundraising or walk with us,

 
please visit the link below (cut and copy to your web browser):

http://events.congenitalheartwalk.org/site/TR?px=1086479&pg=personal&fr_id=1240&et=iyYWQXE1eb3A3xvGd2c7Rg&s_tafId=1461

The trial

Our journey into the a tube free Lucy lasted only four days.  Although the answer to our prayers was 'not now', she did a really good job.  

On Saturday she drank almost 10 ounces of fluid and ate 3 tablespoons of puree foods. Sunday she increased her intake of fluids to almost 15 ounces and ate roughly the same in puree foods.  Then Monday we hit the wall.  She barely drank 4 ounces of fluids and eating was starting to be a struggle.

Then that night she got hysterical.  We managed to calm her and got her to consume another 4 ounces of formula.  Tuesday she had gained a little bit of weight but was close to her cut off weight of 7.3 kg.  Tuesday was a mirror of the day before with struggles to get her to drink and eat anything.

After many emails with the team, we knew Lucy could not sustain this.  That night we placed the tube, gave her about two ounces of water and did a night feeding.  We are back on our tube schedule and Lucy is eating well by mouth.  We aren't sure when she will be ready, but the best news is that we can do another trying before heading down the path of surgery!

We learned a couple of things.

1.  Eating takes a lot of stamina and strength

2.  Lucy has the skills to eat and drink

3.  Lucy does not have the stamina or strength to do this on her own

4.  I cry a lot

5.  We need to focus on getting Lucy to drink

6.  The tube is not bothering or hindering Lucy from eating and drinking

7.  Surgery is no longer a necessity (Lucy may just need more time to practice)

8.  The NG tube is not that bad

We loved seeing her entire sweet face for four whole days and we can't wait until that is the norm.

But for now, these will have to hold us over.

Months seven through twelve and a trial

We still haven't made it to get professional pictures.  Who knew working up to pulling the NG tube was going to be all consuming.  When we are not in her high chair coaxing her into sips of formula and bites of food, we are offering water and snacks through the day.  We are constantly thinking of new ways to introduce food and little tricks that will increase her intake.

It looks like this weekend is a go.  Leading up to this 'trial' has been slightly emotional.  I'm a little boggled by it too.  I can go into surgery day and not shed a tear, but every time I have thought about pulling the tube my eyes well up (they just did right now typing this).  I don't know if it is because during surgery it's out of my control, my trust is the skilled doctors.  Where as this trial is on us.  If Lucy isn't successful, we failed. 

So today I am trying something different.  When I start to feel emotional, I am going to repeat Jeremiah 17:7.
      But blessed is the one who trusts in the LORD, whose confidence is in him.

I am hoping this will ease my anxiety as we pull her NG tube tonight and wade into a weekend of unknown.  We will need all the prayer support we can get.

Pray specifically for Lucy to drink!  We need her to drink 20 ounces of formula to maintain her weight.  We understand the first day will not be that much but if we could do half of that we could consider it a success.

Pray that Lucy can take all her medication orally.  We have been practicing so we hope for an easy transition.

Pray that she can start to understand what hunger pains are and that drinking and eating will make them go away.  More or less, pray that this whole eating thing just clicks.

Pray that Mike and I stay calm through this trial, as that will be what Lucy needs most.


Anyway, we are still taking plenty of pictures on our own and boy is she changing.

September

October

Lucy seemed to go from baby to toddler between these two months



November



December

January

February

Lucy turns one and crawls

Lucy turned one year old on Friday the thirteenth at 11:35 am.  We celebrated in style with a small party and some cupcakes.  Lucy could not get enough of the attention.  She smiled straight for three hours and then hit the matress hard.  She opened presents but in true baby fashion was more interested in the tissue paper.

Our Birthday girl, wearing red for CHD awareness week!

I want to say that this past year has been the hardest of my life, but I am all to aware that our future is uncertain and that this year could pale in comparison.  There were a lot of lows, but as I look back at the last six months, Lucy has become this smiley, happy, a little too smart for her own good baby.  She is learning to play by herself, loves to be frightened and smiles at anything you sing to her.

We have been slowly gearing up for our NG tube free trial.  I have been told my expectations are too high.  Or at least our speech therapist thinks so.  Every session, I think is just so so....she says Lucy does amazing.  I have been slowly working on that.  Two weeks ago nutrition came on to help as we head towards a tube free Lucy.   My main goals were for Lucy to recognize hunger cues and to decrease frequency of tube feedings.  Our first change was to stop the 5 am feeding for a week to see if Lucy would be hungry in the morning to consume three ounces of formula and still eat some food.  Unfortunately, even without the feed we are not seeing her change much in the way of morning eating.  We have been better about offering her drinks of water through out the day.  She will usually take a sip or two then any sips thereafter are spit out for fun.  One evening she managed to sip three ounces of pediasure and dribble it down the front of herself.  Talk about a sticky mess.

I am enjoying a little more sleep in the morning so we have decided to discontinue the early morning feed and increase her calories per ounce to twenty seven.  As we increase calories we can decrease her volume.  With little progress, our nutritionist asked if we were still ready to do a trial.  Although I am terrified, Mike and I feel it may be the only way for Lucy to really get this eating thing.

The other change we started was giving her some medications orally.  Without the NG tube Lucy will have to take all her medication by mouth.  As of now, she takes five medications and a vitamin.  For the inital trial we will decrease to only the two medications that are absolutely necessary for her heart.  If Lucy does well and we continue on past a trial phase we will introduce the remaining ones.

We have been told that the first couple days are really hard.  The likelihood that Lucy will barely eat the first day is very high, which will lead to a lot of crying.  Add in shoving medication in her mouth and well, you can get the picture.  We will meet with speech and nutrition next week to decide on a date to pull the tube.

Lucy has been working hard at learning to crawl.  For the last two week she has been rocking on all fours and every once in awhile moving one hand forward before sliding into tummy position and rolling over on her back.  Then last saturday night as Mike and I were both in the family room together she crawled.  About three paces.  We were glad we both got to witness this at the same time.  We have been able to get by this far without 'baby proofing' our house.  But it seems that baby gates and outlet covers will now be the norm.  Our physical therapist said that usually late developers take a little longer to walk.  This is because they realize walking leads to falling, so they wait until they have it mastered before they fully let go of whatever they use for assistance.  I'm not sure I'm ready for a walker....so take your time little girl.