Boy oh Boy

October was a big month for Lucy.  Our main focus has been eating and our plan to decrease her tube feed each week until the trial worked great!  The day before Halloween we were going to pull the tube, but Lucy beat us to it.  On Wednesday (10/28) during our speech session, Lucy decided to show off how much she could eat and then right at the end threw it all up, including her tube.
I looked at Laura (our speech therapist) and asked, "can we do it early".  We were all on board and pulled the tube.  We received our minimum intake from the doctor at 540 mL (18 ounces) of liquid and 750 calories.  We knew her intake would not quite be there but would look for small increases each day.  In order to make eating as easy as possible, we used mostly pureed soups and fruit/veggies with  chips as reward.  We are now almost two weeks in and doing great.  We got the go ahead from cardiology to continue as long as her weight does not decrease significantly.  Lucy is currently eating about 3 tablespoons of food at each meal and drinking almost 550 mL of formula and water.

On 10/28/15, we officially became tube free.  It took us 20 months, some days harder than other, but all the work put in was so worth it.  We are so excited to see this face every day.

I am loving not having to worry about tube placement, taping or anything related to NG tubes!

Lucy got baptized on October 18th.  She looked adorable in her dress, but was very unsure of Reverend Meyer, but no tears, so a win!

We also took our first road trip up to Winona to see a soccer game and visit the campus.  My worries revolved mostly around the car ride because Lucy has not always been great in her car seat.  Lucy proved us wrong.  She slept over three hours on the way up there and then over two on the way home.  In between, she was in constant motion.  She did not want to sit still for a moment. Thank gosh my parents came with to give Mike and I some help.  I think she would have broke us had we been alone!

Lucy got her first trick or treat experience as well.  She dressed up as a ladybug and hit six houses in my parents neighborhood.  I don't think she really gets it yet, but when she got a taste of the M&M's she was hooked.  Now she gets 4 M&M's cut in half for dessert after dinner.

The last of Lucy's big news, she will take on a new role next May.........BIG SISTER!  I give credit to any photographer that works with kids.  The first picture was my third attempt and by chance turned out good.  I eventually had to tape the blocks together and by the end (the second picture below) there were tears.  The last picture was second place.  Anyway, we are due May 9th.  Everything looks good as of now.  We will have a level 2 ultrasound and an echo to check the heart around 20 weeks.  We are praying for a healthy baby boy.  Oh yeah, we're having a boy.

Let the countdown begin

In just under month Lucy could be tube free for the first time in her life.  In just under month Lucy could no longer be machine dependent for some of her nutrition.  In just under month I may no longer have to sew loops onto her shirts.  Yes, we are gearing up for another NG tube trial.  Our last trial was seven months ago.  Lucy did better than expected, but by day three she was crashing and burning.  She did not have the stamina to intake all calories needed orally.  We placed the tube back on day four and started focusing on her drinking.  In the last two months we have decreased her tube feeding from  four feeds of  190 mL (six ounces) to three feeds of 160 mL (5 ounces) each.  As we have decreased the tube feeding we have seen her drinking increase from 30 mL per day to almost 150 mL.  In the next three weeks we will look to decrease another 60 mL (2 ounces) each week in hopes that when we pull the tube she will hardly be dependent on her tube feeding.  The official date is October 30th.  I can't wait to see this face again! And the plus is we'll get to dress up for Halloween and take pictures with no tube on her face.  It really is the little things!

The last benefit doing the trial on Oct. 30th is we have a cardiology appointment the following Thursday.  If she does good, we can go to the appointment and have Dr. Husayni take a look and make sure we are clear to continue a tube free life.  If the trial doesn't go well, we will discuss g-tube surgery at the appointment.  All prayers welcome for a successful trial.  I should probably add prayers for less crying from mom as well!

Other than that we have just been doing normal things like play dates (with BFF Jack):

The Advocate cardiac picnic (she also rode the ponies, but I don't have a picture of that)

 She got this bear from the picnic and absolutely loves it!

And the zoo

and of course hair styling.....what's a girl to do without pigtails.

Feeling Normal

I can't believe it's been over month since my last post.  But as you know, no posts mostly means no major issues.  We are basking in the world of normal.  I have been thinking a lot about our first couple months home and I sometimes wonder how we did it all.  Oxygen, continuous feeds, two hour bedtime routines, daily weighing, oxygen saturation checks and questioning every little thing that seems not so normal.  Now we are down to weekly weigh-ins and oxygen SAT checks, plus medication only twice a day.

But my most favorite change is definitely our bedtime routine.  I used to have to rock Lucy to sleep,  about two hours, most of which was screaming.  By the time she was asleep, I was so exhausted.  Then we upgraded to rocking for a half hour, then about an hour of in and out of the room crying and rocking.  Next was setting her in her crib and sitting in the rocker in the dark for half hour to forty five minutes, then trying to tip toe out.  But now....we finish the nightly tube feeding, change into pajamas, play for a half hour and set her in her crib and walk out.  I can't believe how far we've all come.

At the beginning of August we went back for our Cardiac Neurodevelopmental Clinic.  Our first was at 12 months old and this one puts us at 18 months.  We made great progress in most areas.

Here are her report cards:

Area:                                                         12 month                    18 month
                                                                   report                         report

                                                                           Testing Level
Cognitive (play skills)                              10 mo.                         14 mo.
Fine motor                                                8 mo.                            8 mo.
gross motor                                               7 mo.                           11 mo.
Receptive language (understanding)       10 mo.                         21 mo.
Expressive language (talk)                       9 mo.                           15 mo.

Dr. Vanbergen and therapists were impressed with her demeanor, she was fast to warm up to all. Her progress in most categories was great.  There were two concerns, fine motor which showed no progress and feeding tube.  They suggested we transition from developmental therapy to occupational therapy to focus on improving fine motor skills.  The feeding tube was a concern because g-tube surgery cannot happen after the fontan due to the possibility of being on blood thinners and we can't have the surgery too close prior to fontan in order to allow healing.   Since we are delaying her 3rd stage surgery until she is three, we have some time.  This news pushed all of us into high gear.  I filled our speech therapists in following the clinic and we have decided it's time to start pushing Lucy to eat on her own.  I truly believe if the tube is not out by our next clinic appointment in February, we will have to have g-tube surgery.

We will be working with speech and nutrition to systematically ween Lucy from her tube dependency.  We have started by decreasing her 4 pm down to only two ounces.  We have seen some slight improvements in her liquid intake.  Lucy is consistenly taking in about 200 mL (or 6.5 ounces) a day.  Doesn't seem like much, but back in March when we shifted our focus to her drinking Lucy was at about an ounce a day.  My hope is we will be close to pulling the tube around Thanksgiving, but only time will tell.

After clinic, we had hour two month check up with cardiology.  All looked good.  Lungs were clear, the switch to pediatric formula seems to be working.  We were granted a three month break and do not have another follow-up until November.

We will also have our yearly early intervention meeting this month.  We will discuss all her progress and decide what services will need to continue and what we can start to decrease.

The other big news is we have started to look into some day care options.  We feel that it would be very beneficial for Lucy to spend some time around other kids.  I don't think we would place her anywhere until we have mastered her feeding, but it's possible as early as next spring we will be there.  As you can see below.....being with other kids puts a smile on her face.

love-hate

I have a serious love-hate relationship with the NG tube.  It has it's benefits.  The biggest is allowing Lucy to get food without exerting much energy.  We all know Lucy started way behind in the size department and growing can be one of the most difficult things for heart babies.  As much as I want her to eat and drink on her own I have no doubt she would not be as big as she is without it.  At almost a year and a half she is eighteen and a half pounds.  Other benefits include feeding her while she sleeps (although we try hard not to), giving medication and keeping her hydrated if necessary.

But somehow, the hate overshadows it all.  Placing the tube and changing the dressing.  That's it.  That's the hate.  I can't tell you how much anxiety I get as we approach each thirty day mark to change the tube.  I dread it.  I procrastinate.  I make excuses to not pull out the tube.  And every time, Lucy does it for me.  Perfect example,  we are five days over our thirty day mark (it's okay, the nurses have said some parents change it every 90 days) and I am finding excuses.  We finish her night feeds, take a bath and are putting on pajamas when she throws up.  Her tube came partially out and I was able to push it back in, but another wave and the entire tube was out.

It was like Lucy saying 'oh no you don't, it's time to change it'.  Begrudgingly, I took the dressing off and got her back in the bath (cause there was puke everywhere).  We let her sleep tube free through the night, but not without snapping a few pictures.

We had her one month post surgery follow-up with cardiology a couple weeks ago.  Everything is looking good.  Her heart function is good, the aortic repair is healing nicely.  Her oxygen SAT have been in the low 90's.  We were given the go ahead to switch off Tolerex a week after the appointment.  At that time we switched from infant to pediatric formula and I can say it is nice not to have to mix formula anymore.  We go back in a month to check for chyle or any fluid in the chest and then we are hoping for a three month break.  That would put us into November, woo hoo.
I did ask about her third surgery and when we would start discussing scheduling and we got some more good news.  Dr. Husayni wants to give Lucy some time to heal from the last two surgeries.  We will be able to wait until she is three.  This means that we will have over a year and a half to be at home.

The biggest change coming out of this surgery was definitely her water consumption.  Lucy is now drinking on average 3 to 4 ounces of water and 2 ounces of milk by mouth.  We are working on a plan to systematically ween Lucy off her tube.  We have started by decreasing one of her four feeds by one ounce in hopes to promote more drinking by at the next meal.  It would be an amazing present to have Lucy tube free by Christmas.  This time around we are not pushing anything.
Surgery did set us back a month in terms of physical therapy.  We hoped to be walking by our next neurodevelopment clinic, but when she's ready she'll figure it out.  I am interested to see the evaluations of the therapists who haven't seen her for six months.
We will be there next week for the clinic.

Continued prayers for feeding progress and as always for her heart function.

In less than two weeks we are hosting the 2nd annual Have a Heart fundraiser on August 8th at Joe's Bar on Weed Street.  Please join us for a fun afternoon of drinking, raffles and silent auction.

2nd Annual Have a Heart

Last year, family and friends came together to raise money for our family to help with medical bills.  The support was amazing and the event was a hit.  The fundraiser made huge difference to our lives, allowing us to focus on Lucy.  I can't imagine our lives without the support of everyone.

All details are below.  We hope you can join us!

If not, please consider making a donation at
www.youcaring.com/lucy-shannon-363540

Any little bit can help.

some little things

I had intended to make a baby book for Lucy, but it appears that life got in the way.  So as it stands now, this blog is her baby book.

As she celebrates 17 months, whoa, I thought I would detail some things she has accomplished and some funny antics.

She crawls.  She has two paces.  Her regular pace which gets her where she wants to go and her sprint which gets her to whatever door is open before we can close it.
She walks assisted with her sit to stand walker or one handed with any adult
She climbs up stairs, all by herself.
She follows simple commands......go get your pacifier, put the blocks in the bucket
She can identify objects by name...soccer ball, walker, Sophie and many others.
She can identify body parts.....head, hair, nose, teeth, feet, hands and ears
She can identify animal by name and sound.....cow, chicken, horse, pig and dog
She says mama, dada, baby and ni ni.
She will eat almost any food, except fruit.....fresh or freeze dried, it's a no go.
She drinks out of a sippy cup.  Most of the time she forgets to breath.
She swings and oh how she loves it!
She loves the mirror.

Now on to the funny.

What you say                                         What Lucy does
'Lucy go boom'                                    She will head butt you.
'Lucy go Ni Nite'                                 She will immediately lay down, for a second.
'Oh my gosh'                                         She will put both hands to her head
Bump it                                                She will High Five your fist.
Give hugs                                              She will grab and squeeze hard
Give kisses                                           She will lean in, open mouthed
'Dancing, dancing'                               Swings right arm across her body
'how much do you love gramma'         Burst immediately into tears

home in 4!

With every hospital stay I learn something new.  This time I learned two things

1.  If at all possible don't have the pre-op appointment on the day of surgery.
2. Versed is our friend

 Unfortunately because Lucy had pink eye, we had to schedule our pre-op appointment for the morning of surgery.  We packed up and left the house at 6 am.  Our pre-op was scheduled for 7 am and surgery was schedule for 12:30 pm.  After the exam, labs and x-ray we had about three hours.  Lucy confined to a bed in a small room for three hours, man o man.  The anesthesiologist came in around 12:30 pm (they were late).  We went over some information, then they asked if we wanted to give Lucy some medicine before sending her into the operating room.  We opted to give her some Versed.  It was the first time she had sedation medication prior to a surgery.  It was hilarious!

The nurse came out after surgery had begun to tell us everything was going as expected.  She also commented on Lucy's demeanor ......she was just chilling and looking around as they were preparing for surgery (another plus of versed).  We received one more update from the nurse when the surgery was complete.  She said it would another fifteen minutes but we could head over to the PSHU waiting room and she would come get us when Lucy was situated in her room.  By 5 pm we were in her room.

The surgeon performed end to end anastomosis where a lateral thoracotomy incision is made toward the back of the patient’s left chest. The patent ductus arteriosus (PDA), if present, is ligated (tied off with suture). Clamps are placed on the aorta above and below the narrowed segment, so that blood can still flow to the upper body and head. The coarctation segment is cut out and the two ends of the aorta are sewn back together.

Lucy came out of the OR with one chest tube and on oxygen.  Also, based on her history we are back on Tolerex!  The doctors wanted to allow the lymph's to heal, so we will be on this awful formula for a month.  Lucy was definitely not a fan of the oxygen cannula.  Friday night we had to give her some more sedation because she kept trying to rub it off her face.  Everything else about our hospital stay was as normal as can be (can you believe you are reading that!).  Thursday and Friday she slept most of the day.  Only waking up to drink a little water and snack on some goldfish.

Saturday Mike and I split time so one of us could be with her at all time.  Saturday morning they removed oxygen and told us one more day with no drainage from her chest tube and we could pull it and go home.  Saturday night a room on floor 2 opened up, so we packed up, moved down to our new room and prepared to go home.  Sunday morning the cardiologist and surgeon came in to pull the chest tube and informed us that Lucy's potassium was high and that we might have to stay an extra night.  NOOOO!!!!
They would decrease one medication then retest around noon.  If everything was good we would be discharged.   Thankfully the second test was good and by 3 pm we were headed home just four days after surgery.  Just a note that we beat the average hospital stay of five days!

Lucy took a two hour nap when we got home.  When she woke up she was happy as a clam to be home.  We have a six week restriction on picking her up under her arms (which is so hard!), but other than that, no restrictions.  By Monday she was crawling, pulling herself up and climbing up the stairs.

We have a surgical follow up in a week and we will see if we can start decreasing some of her medications from surgery.  We'll also see how the hospital stay impacted her.  As of now, she cries every time we lay her down, even diaper changes!

We can't thank everyone enough for their prayers.  Lucy did amazing and we are so proud of her!

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